Tam's Ramblings -

Advocacy and Inadequacy – Part 3

April 24, 2013 | Author: Tam

This is part 3 in of a series that I’ll hopefully be able to finish today (yep, that did not happen, started it a long time ago and just couldn’t manage… sorry for the delay.) The first two posts were basically just backstory for this one. In Part 1 I explained some of my history growing up disabled, and the encounters I had had with disabled communities back then. In Part 2 I explained my current predicament — how annoying my disability, and the conversations that it evokes, can be out in public on a daily basis — and how that situation makes me a rather bad fit for vis-a-vis advocacy work.

The community that I am in now is, honestly, in dire need of more advocacy work, but I just do not have the mental energy or the strength for that right now. Many here think I’m robbing them blind for receiving social security disability in the first place, the absolute last thing I want is to have to confront them in a public venue.

But I have slowly been making more and more disabled friends online lately, many of them are very involved in disability rights and advocacy, and I’ve been wondering more and more if perhaps I shouldn’t be more involved, myself. It’s possible that I could manage it online, but I’m not sure. The thing is, I feel completely inadequate. And that seems rather silly, considering the fact that I’ve been dealing with a physical disability since I was 8 years old. But this disability I have is nonstandard, in a rather infuriating way.

There are three basic types of disabilities: static disabilities, acquired through illness or injury; genetic defects or inherited disorders that are non-progressive; and progressive disabilities, which can be acquired or genetic. Each of these groups faces a different set of issues and challenges, and our life experiences can be vastly different because of them.

For the most part, the first group lived some length of ‘normal’ life before being thrust into the world of disabilities by a freak accident or illness of some sort. Generally they sustain their injury, have to adjust to a new life that includes and accounts for that injury, and then go on with life. There is nothing small about having to deal with a life altering injury or illness. The pain is sometimes enormous (and often continues long-term), there is often PTSD to deal with, recovery can be arduous and seem impossible, learning to become dependent on others, on meds and/or equipment can be seem near impossible, and the shock of losing what you once had is enormous.

But those who are born with disabilities do not face this same experience. Those born with non-progressive disabilities have a whole other set of issues. The view these people have of their disability is often shaped almost entirely by the way in which they were raised.

Raised in a home where they were treated like anyone else, encouraged to get involved, with adults and community members on their side — to advocate for accommodations they needed — many of these people do not even consider themselves disabled, except by the attitudes and obstacles put in their path by society at large. Maybe they were born blind, deaf, with deformities, maybe they require a wheelchair or an alternate communication device… whatever made them different only made them different, not disabled. These people often live up to their potential in ways that other disabled people can only dream of… and unfortunately it leads some to declare that disability is only a frame of mind, which sounds great, unless you’re a disabled person who’s truly struggling. (Some of them, once they leave the bubble of this rather sheltered and positive upbringing, may become seemingly constantly angry against society at large, as they find themselves confronted over and over with disabling obstacles.)

Being raised in a different sort of home can lead to a completely different view of one’s disability. Some children born with disabilities learn from an early age that they are sub-human, either because people around them are telling them that, or because the way they are treated implies that. Bullying often starts in the home. (Many older generations were shipped off to group homes or hospitals and didn’t even have the benefit of being raised in a home… this still happens, but not nearly as often.) Even when the home is fine, though, if the adults in their lives aren’t supportive in the right ways, they may face relentless bullying and obstacles throughout their young lives. If it doesn’t break them, they will learn coping mechanisms, though, and eventually come to a place where they’ve learned how to compensate for their disabilities enough to get through their day to day life at whatever level they can manage, with whatever supports they are able to procure.

The third group ends up with the issues compounded from both of the other groups. Those of us born with a progressive genetic disorder, or those who have acquired a progressive disability, often make it through part of our lives seemingly normal, or with minimal issues, then at some point the world starts falling apart, and never stops.

I imagine the process is a little easier on those who make it to adulthood before they start declining. Barring a tumultuous upbringing for other reasons, they’ve probably formed a solid self-identity, gotten through the torment of the teenage years, and had normal relationships along the way. They’ve got a house built on solid ground, so to speak, that can probably better withstand the storms that the disability will bring.

For those of us who got hit as children, though, it can be a very rough row to hoe. A child’s body is constantly growing and changing. Children are constantly learning and discovering new things they can do, and most people recall their childhoods with a sense of wonder and excitement for this reason. For a child with a progressive disability, though, the constant changes and new discoveries can bring a sense of dread.

Where most childhoods follow a pattern of slowly learning more and more independence, a childhood with a progressive disability is a hodge-podge of starts and stops. You learn how to walk, then you get to figure out how to deal with not being able to walk, or not as much. You learn how to do cartwheels and then one day you learn how to cope with the sudden realization that you will never be able to do another cartwheel. You get really good at a sport, but all that use of your nerves starts to harm them so you have to say goodbye to it forever. You learn to tie your shoes, and then you learn how to still tie your shoes with hands that don’t move the right way, and then you maybe learn how to let someone else tie your shoes for you, or how to find supportive shoes that don’t have to be tied. You learn to button your clothes, and then you learn how to alter your wardrobe, because you never ever want to get stuck again in a pair of pants you can’t get out of.

You learn to be fiercely independent, and take care of yourself, until you do too much and get stuck somewhere, unable to move, praying that someone will find you before it gets dark, and that you’ll be able to live through the humiliation.

These may all seem like little things, especially to someone who has dealt with a far more disabling condition, but it’s not so much the individual things themselves but the constant pattern of losing what you work so hard to gain. Children tend to be very proud of their accomplishments… when they work hard and something doesn’t work it hurts them a great deal. Just think of your own childhood and I’m sure you’ll remember at least a time or two where you were very proud of something, went to brag to your favorite adult, and got shot down. I’d venture to guess it still stings. The hurt of losing independence one has worked hard to gain is much more jarring, and lasts much longer.

Besides, the little things can actually be harder to deal with than the big ones, at least for me. When my hands atrophied in college it was a huge deal. It was obvious, visible, all you had to do was look at my hands and you could see something was wrong. People offered help when I needed it, doctors took notice, no one looked at me funny when I shook their hand limply, because they could tell it was my only option. I accepted help because it was obviously my own choice in some situations. When I needed a different type of door handle installed on my dorm room no one argued about it, they just installed it for me. I didn’t have to fret about whether to try to fill out my own forms ad doctor’s offices and such, because it wasn’t even an option.

But my condition is particularly bizarre, in that my nerves manage to heal themselves partially, from time to time, and after a few years of not overusing my hands they actually gained back some function and the muscles recovered. They look normal now, and much of the function I lost has returned. *I* know that I can’t use them much, or they will return to the state they were in before (and on bad days they shut down just the same or worse than they were) but no one can look at me and tell that. They see normal hands. If they looked closely they might notice that I can’t really straighten them out completely, that they shake sometimes and with certain motions, that I can’t really squeeze tightly, that if I make a fist my hand gets stuck there… but no one looks that closely. They expect me to be able to use them, because it looks like I can use them. If I ask for help with things now I often get funny looks. Even when I don’t get the funny looks, I feel funny asking for the help.

While having my hands atrophy and shut down was more disabling when it came to day to day tasks, it was not as frustrating for me in my interpersonal relationships as it is to have partial/intermittent use, and my pride was much less an issue. And I’ve finally come to the point I was wanting to speak to with this entire series of blog posts.

I do not feel up to the task of advocacy work. I feel inadequate.

In my personal life, advocacy is nearly impossible for me. I may be too helpless to get by with the level of independence I’m used to, but I’m not disabled enough to be comfortable talking about the help I need, or asking for it. And when help is offered, I find it nearly impossible to accept it.

As far as the community is concerned, I can’t go out and give people a pep talk about living with disability, or overcoming the limitations of a disability — as so many other people do — because I’d feel completely ridiculous. I think most people, seeing me on my good days, with no easily noticeable issues, would feel the same way. Despite my very real disability, I would feel like a poser.

I’m that person who parks in a handicapped spot and gets out and walks in somewhere with no trouble. It infuriates you, because real handicapped people need that spot. Had you seen me try to walk from further out in the parking lot, you might have gotten to watch me stumble and fall, or perhaps get stuck, unable to walk back to my car. The only reason I can walk in and back out with no problem is because the distance is so short. But you don’t know that, you judge me on what you see, and I can’t really fault you for that.

In the world of online advocacy work, perhaps this is all unimportant. Perhaps I can become more involved. But I’m not sure that advocacy work can stay online and actually do any good at all. What do you think?

To a man I used to respect…

April 23, 2013 | Author: Tam

This was a letter I wrote after a particularly bad series of encounters with a person I greatly respected for years. I wrote it a few months ago and did not have the courage to finish it or post it back then. I’ve finally finished it, and after much internal debate, have finally decided to publish it.

Dear Sir:

You have no idea what I would give to be “normal”. To keep a regular schedule. To work a regular job. To have a family. To have all of the regular things that you probably have in your life, that probably bore you to tears.

I used to work normal, monotonous jobs. I was happy with them. I never had big aspirations, a simple 9-5 with a livable salary was fine with me. I babysat, I worked as an envelope stuffer, receptionist, customer support rep, tech support rep, database administrator, programmer, consultant, and did various odd jobs. I was happy with most of them. I would be happy with any of them now. My bosses loved me. I took less pay than I probably should have for the work I was doing, but I never really cared.

Sometimes it feels like my entire life has been one long string of learning to give up the things that I love. I was never the couch potato type. As a child, I loved baseball, basketball, bike riding, crossing monkey bars, jumping rope, swimming, and just about anything else that involved lots of physical activity. But as my grip got worse I had to give up the monkey bars; as the injuries piled up from falls I had to stop running and jumping, no more basketball, baseball, gym class; as my legs got weaker stairs became more and more impossible, out went climbing, no more slides, I had to move to a new school with less steps.

As the pain levels rose and nerve function declined I had to start making adaptations to try to hold on to things in my life, in came braces, crutches, canes, wheelchairs. I had to start counting my steps, weighing every movement to see what was required and what I could sit out. As my hands got worse I started typing everything I could, I changed my signature to a few initials so I could still sign paperwork on bad days. When I ran a stoplight, because I couldn’t move my foot to the brake on time, I got hand controls installed on my car.

I’ve spent my entire life trying to find new ways to work around my physical limitations. Every time I lose more function, I struggle until I find a new way to still do the things I want and have to do. But little by little I’ve had to give up things, because there simply wasn’t another workaround. Despite all of this loss there have been a few islands of progress thrown in, but they usually come out more like 2 steps forward, 3 steps back.

When I was in college, I finally got my neurologist to help me look into medications that might help. A muscle relaxant dropped my pain levels so much that I was able to concentrate on my school work again, but he pulled me off of them after a few months, when he saw that the muscles in my calves had dropped significant mass, I was left with serious withdrawal symptoms (I didn’t know what they were at the time, I had no idea the med was addictive). Also while in college, I discovered lightweight wheelchairs and wheelchair sports. I was able to get around well for the first time in years, and I was even able to start playing wheelchair basketball. Unfortunately, so much wheelchair use caused my hands to atrophy. The withdrawal, combined with my hand issues, combined with the severe fatigue and other symptoms that came with cold weather led to my having to drop out of college altogether.

I eventually found a neurologist that would work with me on meds again and we finally found my miracle drug, which turned out to be Tegretol of all things. My nerve function increased, and my pain levels dropped lower than they had been in years. By all appearances things were much better, and I had a few great years. Until, it seems, the Tegretol caused another disorder that led to frightening disorientation, eye problems, and the need for 2 different surgeries before I kind of figured out part of what was happening and learned some ways to cope.

After I had been away from college for a while, using my wheelchair a lot but not nearly as much as I had then, my hands started to regain some of the muscle mass they’d lost, and after that I realized that, given time and rest, my nerves were actually able to recover some function after injury. This is something I was taught could not happen, and it makes little sense given the fact that my neuropathy is progressive, but my nerves apparently have the same philosophy I do, and they keep finding workarounds that baffle my doctors. (My doctors have long been fascinated by my nerve studies, because the amount of function I have makes no sense at all given the extensive nerve damage.) Armed with this knowledge, though, I started trying to use my legs more again, and discovered, to my surprise, that I actually could, as long as I was very careful about which ways, how much and how often I used them. It was around this time that my right arm just stopped working one day, out of the blue, due to a nerve entrapment that may or may not be related to my genetic neuropathy.

Through all of the setbacks and heartaches, though, I did my best to find a workaround every time. For most of the physical issues, I have managed so far. But the one thing I cannot manage is the fatigue. My muscles are very healthy and very strong, my neurologist would tell you I’m built like a tank. When my nerves are capable of telling them to move they do, when my nerves are capable of telling them to hold, they hold, and when my nerves are capable of telling them to let go, they let go. But my nerves are damaged, inconsistent, and constantly under attack from my immune system. My nerves have nearly forgotten how to send the “off” signal altogether. My muscles are randomly being told to tense or move and almost never being told to release. This keeps me strong despite the nerve damage that would normally cause atrophy, it also keeps me in pain and exhausted. The solution is to take medications that dampen the signals and tell the muscles to relax anyway. Of course those are also meds that themselves cause fatigue.

What you do not understand, is that the physical issues I have are not the real disability. The pain levels and the fatigue are the real disability. I simply cannot function day to day, with the amount of pain I have, without meds. I simply cannot function, with the amount of fatigue I have, without meds. But the meds that help the pain also increase the fatigue. The meds that decrease the fatigue cause a different type of fatigue, which means the best I can do is find a middle ground between the two, where I can sort of function… and sleep, a lot. Since my disorder is auto-immune, I also go through cycles where my immune system is busy attacking me. This causes the type of fatigue you get when you have the flu, on top of everything else.

So I require 10 hours of sleep on the good days, and I go through days, sometimes weeks, where I simply cannot stay awake. It is not rare for me to sleep 3 days straight, just getting up long enough to visit the bathroom and refill my water bottle. This is not laziness. When I was in school, I handled this by staying home on the bad days. I cried from the pain until I could eventually fall asleep at night, and my parents or siblings fought tooth and nail to get me to wake up for school the next morning. On the good days I got permission from my teachers to listen to music or read books during class, so that I could distract myself into staying awake enough to hear what was taught (and I still got great grades).

When I was working full time, I set multiple alarms to wake me up in the mornings. I handled the fatigue at first by sleeping during my lunch breaks, when the disorder progressed to the point that wasn’t enough, I dropped a few hours on my work week, when that wasn’t enough I took Wednesdays off so that I could sleep a day in the middle of the week. But it got to the point where that still wasn’t enough, I was regularly falling asleep at work. My employers generally let me get by with this, because I was doing great work in spite of it. But eventually it got to be too much, so I stopped trying to work a regular job and decided to do consulting work instead.

When my arm went out, I was at a complete loss. I had spent my entire life finding work-arounds for my legs and my hands, but I had always been able to count on my upper arm strength. After all of the things I had had to give up already, I simply had no idea how I was going to function without both upper arms working. The pain in my arm was off the charts, and supination and grip were impossible. I couldn’t drive safely. I couldn’t type. I couldn’t get my wheelchair out of the car. I couldn’t use my crutches. I had another medical problem caused by the meds at the time that left me unable to sit up, so I had to spend most of my time laying down. I had a major project underway that I simply couldn’t complete, and my customers lost a tens of thousands of dollars because of it. I had started back to school to finish my degree but had to drop out again.

When my arm started to recover, I went to the vocational rehabilitation department for help figuring out what I could do. They had no answers. They refused to help me find anything, because they felt working was beyond hope for me. They talked to social security, who had a fit because they thought I should have been on full disability years before. Where most people are denied those disability benefits, I was forced onto them.

I was not willing to give up, but I was not able to keep living in California. I moved back to Ohio, against my better judgment, because I thought I would have a better support system here, the cost of living is a lot lower, and I figured I’d eventually find another work around that would let me keep being productive. I also knew there was a surgery that could help my arm, and I figured someone would be willing to do it.

Fast forward a few years, and most of the people I encounter seem to see a fiercely independent girl that can take care of herself. Because I live alone, and don’t really have a support system here at all, I simply don’t have the ability to venture out into public on days when I can’t function well. Because most homes around here are not accessible, I simply don’t visit you unless I’m doing well enough to handle it. Unfortunately, this has led to the perception that I must always be doing as well as I am when you see me out and about, which is very far from anything close to the truth. The days I venture out are my very best days, and the act of venturing out generally takes quite a toll on me once I return home, making the following days even worse than they might have been.

It is all I can do to keep up with the necessities of cleaning, laundry, yard work and such, but I do as well as I can. I have always been independent and I want to stay that way as much as I possibly can. And I desperately want to be supporting myself as well, despite the situation I’m in.

So I started my own business making toys. It probably wasn’t the best idea in retrospect, to start a business where I had to use my hands, but it was the best idea I had, and at least it was something. At the time I thought that my arm would recover, and I could make things on the good days and sell them on the bad days. The business has done well, all things considered, but without startup money a business can only grow so fast. With weeks and months where I can’t be productive, it’s bound to grow slowly, and with an entire year where I had to shut down because of uncertainty in the toy safety laws, I lost all momentum and had to start over. But assuming I could keep plugging away and didn’t lose more function, I really believed I could build the business into something that would not only support me, but allow me to hire others. That was my goal.

But that was not good enough for you. You told people behind my back that I’m stealing from you by collecting disability. You joke about how I’m taking advantage of you and robbing you blind. You think I’m just fat and lazy and milking the system. But you’re only showing your ignorance. You’ve never even asked me what’s wrong.

I would give anything to have a regular job, or even go back to consulting, but what kind of job do you take when you don’t know from day to day which limbs will be functioning? How do you look an employer in the eye and say you’re right for the job when you don’t know whether you’ll be able to stay awake for more than 2 or 3 hours in any given day? What kind of person takes a job, knowing full well that they probably won’t be able to handle the schedule? What kind of person takes a job, when they know they may have to call in sick for an entire week? What kind of person takes a contract job, only to watch their customers lose tens of thousands of dollars when they can’t make the deadline? Do you really want me lying to get a job I’ll end up losing anyway, when so many better suited workers are desperate for jobs right now?

Perhaps you would prefer that I grabbed a piece of cardboard and sat on a street corner, begging for my living. You could watch me rock and moan in pain, off my meds for lack of insurance, with uncontrollable spasms. You could laugh at me as I collapsed, while trying to walk somewhere to find a place to sleep. Perhaps then you would realize how bad off I am without these supports, perhaps you would be disgusted, and think that someone should do something to help people like this. More likely, you would just assume I was a drug addict, on welfare, and would rant more about how people like me are stealing from you and robbing you blind.

You have been blessed. You have a loving family, a good job, and have come through life relatively unscathed, with your abilities intact. Sure, you have had setbacks, you have had injuries, you have pain to live with, but much of that is due to hard living and reckless decisions in your youth. Perhaps you are hard on yourself. Perhaps you blame yourself for the pain you’re in, and that makes you want to blame others for their pain. But not every situation is the same.

You did not come out on top because you are smarter, or braver, or worked harder to overcome your struggles than everyone else (though you are smart, and you may be brave, and you do work hard, and that is commendable). You came out ahead largely because good people were praying for you, supporting you during your down times, and giving you second chances when you screwed up. Instead of thanking God for your good fortune and passing on some of the goodwill, you’d prefer to rub it in the faces of those who have not been so fortunate. And instead of offering a simple word of support, that could do more good than you’d ever imagine, you’d rather try to break someone who’s already down.

I wonder if your bitterness towards those of us who are struggling is blinding you to your own blessings. Can you even enjoy the privileged life you lead? I feel sorry for you. I wish I could help, but you’re too busy pushing me down to see that you are drowning.

Sincerely,
Me.

What’s your ideal church service?

April 21, 2013 | Author: Tam

(I started this blog entry months ago and am just now finishing it, so if the first part sounds odd to those who know what I’ve been up to lately, that’s why…)

I had to drive back home from my parents house tonight, not really a long drive, but an hour and a half allows for a decent amount of reflection. I spent most of the time musing about the differences between various church services, and what some people consider “proper”. I grew up in church and gave my life to Christ when I was 8 — over the years I’ve attended services at more churches than I could even think to count, in a wide variety of denominations.

The past few years I’ve been gravitating more towards pentecostal churches (while searching for a new home church) and the overlaps between what people consider “pentecostal”, “holiness”, “full gospel”, and “charismatic” can sometimes make for some very unexpected experiences when one goes to check out a new church. Many of the people from the churches I grew up in hear the word “pentecostal” and immediately freak out, recalling stories of poisonous snakes being passed around during services, people barking like dogs, or just mass chaos.

I recently went to visit a church with a good friend of mine, they considered themselves old-fashioned holiness pentecostal, and they’d just come out of a 2 month revival. At one point during the worship service, amidst other things like crashing symbols, head-banging, isle-running, people dancing jigs, etc, I looked up to find the little 70-something year old pastor jumping 6 feet or more, from the very top of his lecturn down to the floor below the stage. I found this quite astonishing, given his age, and felt the need to tell Mom & Dad about it.

Services are markedly different at their church, and I’m sure they would be completely uncomfortable witnessing one like that. In any case, on the way home I was thinking about the differences and which of the various types of services makes the most sense to me, and why.

My thinking went like this… Church services can be about a number of things, depending on the congregation and why they’re coming to church.

Some people see church as a social club, or a weekly obligation. Services, then, are all about social gathering, ritual, visiting your fellow congregants, and putting in your obligatory time in prayer, communion, or whatever activities are seen as part of what you call “church”. Much like a board meeting, there’s an expected set of activities and an order to follow. The service goes best when everyone is calm, collected, and in their place, so that the event can run smoothly and people can get on with their lives.

Some people see church as a place to recharge after a long week. They come wanting to be entertained, get their fill of fellowship, have their emotions revved up and their heart refreshed. Services then should often get the kids out of the way (so that they get a break from parenting), and should knock their socks off. The music has to be positive, upbeat, and energetic. They want to get wound up, pumped up, and filled up so they have the energy to take on the coming week. The worship leader has to know how to stoke a fire, and pastor’s job is that of a motivational speaker. If people with this attitude are pentecostal or charismatic, they also want the Spirit to entertain them, so they want to hear tongues and see people dancing and running and get so worked up that they’re disheveled from the excitement by the time the service ends.

But are either of those things what church is supposed to be about? Is going to church supposed to be filling a social obligation? Should it be all about you and your needs? Or is it supposed to be about filling your obligation to God?

Yes, we often need recharged after a long week, church is a great place to meet people with similar interests, encouraging messages are great, and getting all worked up while singing can be a really great experience, but you can get all of that at a concert of your favorite band, or maybe at your local senior center, depending on your tastes.

God’s saving grace wasn’t offered as a club membership card. Christ’s radical sacrifice pulled us out of certain doom, and we should be excited about that. We should want to shout it from the rooftops (or twitter, perhaps, these days). We should be excited for every chance to draw closer to him. And yes, we can do it from home, it’s not necessary to wait til church time (and we shouldn’t wait) but we humans are so easily distracted by the everyday mundane and the slings and arrows of life, and sometimes that weekly meeting is necessary to refocus ourselves on what is important.

Part of a healthy church service then, I think, requires time to reflect on what He did for us, time to refocus and regain that gratitude that we had when we were first saved. Some of that comes in worship. Not just singing praise songs, but true worship — true focus on giving God the praise he deserves for his love and sacrifice — sometimes with song, sometimes with prayer, sometimes with testimonies and praise reports. And when we’re in the worst places in life, sometimes hearing others give those testimonies or praise reports, hearing others truly praising God, is enough to help us find our own way back.

When you go to a concert you may scream praise for the musicians, clap, yell and sing along at the top of your lungs. Why? Because you love their talent? Because the words they wrote mean so much to you? Because they’ve provided you with entertainment for a fee? When you go to church, do you sit on your hands and try not to fall asleep? Is God’s sacrifice such a small thing that you can’t even give him a shout or clap your hands? If you do shout and clap, is it to praise the worship leaders, instead? As if they’re really there to entertain you, to get you worked up, instead of trying to lead you to a closer walk with God? Is there something wrong with this picture?

Our commission wasn’t to come be entertained once a week for the rest of our lives, it was to go and make disciples. Just as we can’t train people to follow Christ if we’re not following Him ourselves; we can’t teach people about Him if we don’t know about Him, so part of our job as Christians is to be good students. And if we’re going to be getting together once a week to refocus on praising Him, perhaps we should learn more about Him while we’re there. That’s the whole point of having teachers and preachers, I think. Not to tickle your ears, tell you how great you are, inspire you, send you home with warm fuzzies; but to teach you, to correct you, to help you grow in your walk with God so that you can do a better job of going out into the world and spreading the good news.

“But what about the Spirit!?” you say. And to that I say: the Spirit doesn’t come to entertain us, either. The Spirit doesn’t show up just to give you a warm fuzzy, or a message in tongues, or knock you on the floor, or make you run around screaming. He’s not there just to serve you. If He shows up, and if you don’t drive Him away, He’s there about the Father’s business. Sure, depending on your personality type and how you react to Him sometimes that means you’ll get that warm fuzzy, or a message in tongues, or you’ll be knocked to the floor from the intensity, or perhaps you’ll get so emotional about it that you’ll run around screaming. But that is not the point of His visit, and if you focus on that — if you focus on your own emotional response — you’re missing a lot. Now, yes, the Spirit is a comforter, and part of His job is to comfort God’s people, but He is also meant as a helper, not for each individual but for the kingdom of God as a whole. (1 Corinthians 14 has a good discussion of all of this).

Sometimes it serves God’s purpose to comfort a person in their time of sorrow, sometimes the Spirit’s job is to chastise, sometimes to edify, sometimes to teach, and sometimes to fill a person with power and give them the right words to speak. What the spirit does with you in one service is not what the Spirit will do in every service. God’s voice may be in the fire one day and in the still small voice the next. If you come wanting to get riled up and excited with every service, God will not be able to have His way when He needs you quiet and reflective. If you come wanting to sit on your hands and have a nice relaxing time, God will not be able to have His way if He needs you to shout a message of encouragement.

God knows what He’s doing, and we need to let Him have His way in ‘our’ services.

Advocacy and Inadequacy – Part 2

April 9, 2013 | Author: Tam

This is Part 2 in what will likely be a 3 part series. Here’s Part 1, if you haven’t read it yet.

So I’ve started getting involved in the disabled world once again (mostly online, for reasons I’ll try to outline here). And unlike the sports world, where I actually had a little talent. I feel completely inadequate now.

On a wheelchair basketball team, many of the players walk into the gym, pushing their chair, before doing a striptease to remove their fake legs or their braces so that they can get in their chair to play. Walk into a gym on a tournament day and you’re liable to see an entire row of fake legs, pants and all, leaning against the bleachers… it can be quite disconcerting. In this environment, no one gives a second glance to a girl with neuropathy, who can walk sometimes but uses her chair for long distances or bad days, and has to tape her hands to get them to put the ball where she means it to go.

Even a fairly ‘hidden’ disability becomes obvious to those who see it day in/day out. My fellow ball players knew of my limitations, they encountered them during games, they saw me struggling to walk or use my hands when we went out after games. They knew I was disabled, even though I had a rather bizarre kind of disability.

Anyone who ends up spending much time with me in more than one environment will eventually come to understand my limitations in a similar way, but this does not apply to most of the people in my life right now.

I live alone. Very few people see me on my bad days, because my bad days generally prevent me from leaving the house. Add to that, that over the years, despite the progressive nature of my disability, I have slowly learned how to prevent many of the the exacerbations that lead to bad days and loss of function. I’ve also found a decent medication (allergic reaction notwithstanding) combination that has left me in a generally functional state most of the time. Most of the time I can walk, and often can manage to look fairly normal doing so, even without my braces.

This has left me in a rather bizarre situation. Here’s what I mean by that…

There are some people in my life who have never seen me using a wheelchair. Several of the people in my small-town post office, for instance, have only seen me walk in. Sometimes with a cane, sometimes without. It’s only a few feet to the counter and back to my car, and there is no situation in which it makes sense to haul my chair out of the car, put it together, fight to open both doors, twice, and load the chair back in the car again, just to check my PO box or mail something. If I can’t walk, I can wait til tomorrow, or I can schedule a mail pickup. People who work the convenience stores nearby have the same experience of me, as do those in most of the restaurants.

There are other people in my life who have never seen me out of the wheelchair. I use the chair for long distances, or any time I’m unsure of how much walking will be required. I do not walk into a grocery store. I rarely walk into a church (it’s ridiculous to try to concentrate on praising God when you’re in massive amounts of pain or worried you won’t be able to get back to your car afterwards). Consequently, many of the people at my church, or a church I have only been to a few times, assume I’m paraplegic until I hop out of my chair to do something and freak them out. I’m sure many of the people in the grocery stores, Walmart, the Y, doctor’s offices, movie theaters, and various other places assume the same.

This can be extremely confusing to people, for reasons that are perfectly understandable. Those who see me walking most of the time think I’ve sustained some sort of sudden injury the first time they see me in a chair. Those who see me in the chair most of the time think there’s been a miracle the first time they see me walk. (And on some occasions, people don’t even recognize me at all.) I do not have the time or the energy to stop and explain my entire life to all of these people, nor would I want to. And my attitude is often less than conducive to helping end this confusion.

Not that I’m excusing a bad attitude, but consider it from my perspective… If I’m using a wheelchair in a circumstance where I would normally choose to walk, that means I’m already having a very bad day, pain levels are high, and something has compelled me to come out into the world despite this. I’m not going to be in a good mood. Then I run into Joe Schmo, a nice enough guy (who I think I should probably know but I’m not sure where from because I cannot remember most faces), who, upon seeing me in a wheelchair for the first time totally freaks out, and says “oh my gosh, what happened to you!?!”. Now, on a good day, I would likely say “oh, nothing, I use a chair on bad days is all” or something similar, while smiling at him to try to ease his panic. On a bad day I cannot muster this type of response. As well intentioned as I know a person is, “the what the hey happened to you?!” reaction always rubs me the wrong way. I rarely have the energy to engage in small talk on these days in the first place, and I know that if I respond, I’m likely to bite this poor guy’s head off for no reason. I’m likely trying my hardest already to get enough energy to get done what I need to do and get home, hoping beyond hope that I don’t have to talk to anyone at all.

The opposite situation can be just as frustrating, but for different reasons. My disability affects both my arms and my legs, in varying degrees, in ways that vary from day to day. So sometimes when I choose to walk, it’s not because my legs are doing better, but because my arms are doing worse. Sometimes I can’t physically lift my chair out of my car, sometimes I know I won’t be able to push the chair, and sometimes I have to even leave my cane in the car, because as unsteady as my legs are that day, I know I won’t be able to hold onto the cane.

So I’m walking along, however precariously it feels to me, however much pain it’s causing, and I run into someone I know. More often than not, running into someone I know somewhere, while I’m on my feet, is horrific on it’s own. People love to stop and talk when they meet someone unexpectedly (even I do, on good days, usually when I’m in my chair! lol). Stopping to talk while I’m on my feet hurts. If there’s not a place to sit down, or something to lean on it may cause me major problems. I may risk not being able to make it back to my car, I will likely have to deal with much less ability a day or two later.

In this context, when someone says to me, “oh, you’re walking, how wonderful!” My first reaction is to want to glare at them and groan. When they couple that with “God really must be answering prayers” it tends to make me mad. Not because God doesn’t answer prayers, but because I’m standing there in massive pain because my arms are worse, this is not a case of answered prayers, and their ignorance is infuriating. But they mean well, and I understand that. From an outside perspective, someone who doesn’t know the details of my condition and doesn’t bother to look for the pain behind my eyes will understandably come to such a conclusion. If I tell them that no, this isn’t God answering prayers, this is me too sore to even use my mobility devices but desperate enough to venture into public anyway, that accomplishes little but taking the wind out of their sails while making me look bitter. There’s little I can say at this point that won’t dishonestly perpetuate their ignorance, depress them or offend them with my ‘negativity’, or just make things harder for me.

The third alternative is just as frustrating. Say I *am* having a good day. I’m walking somewhere I usually take the chair, someone sees me, and says, “Tammy, you’re walking! That’s so great! Praise God, he must be healing you!”. Now, they’re happy, they’re praising God, I *am* having a good day, part of me wants to just praise God along with them, but this is problematic, and here’s why: the next time they see me I will probably be back in my chair. If I praise God along with them, and don’t stop to correct their view of my disability, likely one of two things will happen the next time they see me in the chair: 1) They will be disheartened. They thought they witnessed a miracle the other day, and here I am still disabled. In worst-case scenarios this may actually shake their faith. I want no part of that. 2) If they buy into the word-of-faith nonsense, they may immediately assume that I am in the chair again because I lack faith. I do not like confrontation and I do *not* want to have that conversation.

I am, therefore, compelled to make sure that no one walks away from an encounter like this believing that they’ve witnessed a move of God because I happen to be up and walking that day. I may joke about it, but I have to try to make sure there’s no confusion. And I’ll admit I’m a little bitter about constantly having to have this conversation. I try my best to make sure that everyone I meet, while in the chair, knows that I can actually walk. That way I can try to avoid this conversation altogether. But I inevitably run into people who remember me when we may not have even had a conversation before. In these cases this often happens, and I’m left once again having to burst someone’s bubble and tell them that no, they’re not witnessing any kind of miracle. People do not like this conversation any more than I do. There’s no happy, positive, light-hearted way I’ve found to say sorry man, no miracle here, I’m still disabled! Even something like “God may heal me one of these days but it hasn’t happened yet, I am having a great day today, though!” comes across to a lot of people as naysaying. How dare I not see the miracle in it. If only I’d believe that my good day was a healing maybe it would stick! I cannot possibly convey to you how frustrating it is to have to encounter these kinds of reactions over and over and over again.

Usually, after a conversation like this, my good day is ruined. I just had to stand there for however long, usually without a way to sit down or something proper to lean on, so my legs are tiring and possibly shot for the day now, and my mood has darkened besides.

So if you ever see me out in public and wonder why I go through stores with my head down, trying my hardest to avoid any eye contact with anyone, sometimes with headphones in so I won’t have to notice that person across the way that’s trying to get my attention… these conversations are why. Some days, I just cannot deal with the prospect of having to have any of them.

But a person with this type of attitude out in public hardly seems a good fit for any kind of advocacy work, right?

And this is where I’ll break for Part 3, where I’ll hopefully finally get to the actual post I was trying to make in the first place :P

Advocacy and Inadequacy – Part 1

April 9, 2013 | Author: Tam

(I’m going to do this post in parts, because, as it turns out, I simply can’t write a blog entry lately that doesn’t go on forever, and I’m trying not to exasperate anyone)

If you follow my posts on Facebook you may have noticed that I’ve been posting quite a few articles lately that deal with things like disability rights, ableism, euthanasia, autism, etc. You may be confused by the amount of posts along these lines, or, if you’ve only recently been following me there, you may wonder if I’m some kind of activist.

I was thinking about this the other day and decided I needed to write a blog post on it. I wanted to write this yesterday but got sidetracked by the previous post, which got too long to add to. This one’s going to be long as well, but hopefully a few of you will take the time to read it.

Over the past few years I’ve gotten more involved with the disabled community (and the autistic community, which overlaps, of course) than I have been since I was playing wheelchair basketball in college.

that's my game face...

Back then, my sole focus was on the disabled sports world, which sucks you in to this sort of alternate reality, a very small world full of very talented people. Everyone knows everyone else, and anyone in the disabled sports world who is any good has probably been to or is thinking about going to the paralympics, sometimes for more than one sport. Basketball was the only sport I was really interested in, and it turned out I was great on defense. But I hadn’t been involved very long when I got a $10k scholarship offer to IU (who, at least at the time, had the best wheelchair sports program in the country, and treated it like a regular varsity sport), and people started talking about the next paralympics.

I was a bit overwhelmed, but for the first time my athletic nature was able to shine beyond my disability. I was healthier than I had ever been. I was in my element. I was surrounded by people who were all disabled, but who were all in their element. Many of them with sponsorships from wheelchair companies and the like.

Being surrounded by other disabled people for the first time in my life left me a bit dumbstruck. I had worked with disabled kids in the past, and knew a decent number of autistic and otherwise disabled people, so it wasn’t that I had no exposure to the disabled world. But these were people of various disabilities, with varying degrees of problems, all immersing themselves in physical activity instead of running from it. I started working in OSU’s sports center with the adapted aquatics and other community programs and I was exposed to an even larger and various group. I spent large amounts of time with people of all ages, with spinal cord injuries, amputations, polio, quad cp, sma, MS, and many other disabilities.

Their attitudes ran the gamut. We had the classic “angry cripples”; we had those determined that they had no disability at all, despite the hardware they depended on; we had lonely teenage boys whose mom’s brought them in, hoping beyond hope that this could finally help them gain some self-confidence despite their extreme limitations; we had guys who were in it to show off and find hook-ups; we had the occasional hypochondriac; we had former paralympic champions who were well past their prime, hanging out just to stay involved; we had rising stars; we had people who just wanted to see what this crazy idea of disabled people actually participating in sports was about; we had a few in physical therapy; we had PT students trying to gain credits; we had an entire little community, with all of it’s diversity, all thrown together in one little world full of sweat and hard work.

And it was awesome. Especially for me. Especially considering where I had come from.

I was exempted from gym class from grades 4-8. When I got to high school physical activity credits were required to graduate, and I lived in a small town who only had one real option, gym. The kids in sports I think were allowed to count that as their credit, and some of the teams had access to a weight room, but most of us were stuck with an old style gym class, that did a small amount of weight training in the spring.

Let me convey to you how insane my high school was… I was not even allowed to bring my wheelchair in to gym class. You read that right. I could walk, but I used my wheelchair some days, when I was doing badly. Our school had a ton of stairs, and the poor custodians were actually tasked with hauling my fat butt around from class to class on one of these things:

It's far more ridiculous than it looks.

If I hadn’t had a death wish already I probably would have been frightened of the thing. Every single trip down a flight of stairs felt like a brush with death. At various times the thing tipped, or my wheelchair came unfastened on one side, or both, and I was left hanging by the seatbelt, sometimes dangling over a side railing. If we were running a bit late, or it was a long trek between classes, the bell would ring and a rush of kids would come streaming past, often hooking book bags on the parts that hung out, or tripping into or over me or the custodian, or getting run over. I often wonder how many injuries this thing actually caused, though I think we somehow managed to avoid any serious ones.

In any case, I had to have my chair at school, because it was required for the stairclimber. Despite that fact, and despite the fact that the custodian wheeled me to gym class with my chair attached, every single day, I was not allowed to use my chair for gym class, so that I could, you know, participate in gym. So what did I do, you ask?! I hid in what I think was a concession stand, but all closed up amounted to a small closet, and I did 100 sit-ups.

That’s right. My high school gym teacher and the principal got together with me, and the best alternative they were able to find for me to complete my physical activity requirement, was to hide me in a closet and have me do a lot of situps. Because God forbid anyone actually have to see a disabled kid participating in a majority of the activities others did, by using her wheelchair. They also made me write a report or two that semester. The next semester I was actually able to convince them to let me lift a few weights, huzzah! But I still had to do my situps and write a report, since I couldn’t run or do the other activities, because, you know, I wasn’t allowed to use my chair.

But I had had to pick my battles. I had already fought with the school to *get* the use of ridiculous stair climber so that I could go to class with everyone else. I’m not sure what they would have done with me otherwise, but it would not have been pretty. I had also had to fight with the administration on a number of other issues related to academics and other things that would actually affect me later in life, so I just didn’t have the energy to fight much on the gym thing.

In any case, when I got to college at OSU I was literally chased across campus by a chick in a wheelchair (who happened to run the adapted recreation department) who proceeded to beg me to come try out a sports chair she had stuck in a closet somewhere. I was baffled, but intrigued by the idea of a sports chair (and whoa, look how easy she’s moving around in that beauty she’s in!) and 2 minutes in that old quickie tennis chair sold me on the prospect of wheelchair sports (and lightweight sports chairs!).

I got involved in the disabled community shortly after that, but we were intensely focused on sports. I heard rumblings here or there about advocacy type things, but the diversity of the people involved in our programs was such that no one ever really rallied around anything other than sports, unless it involved figuring out the logistics of getting an entire group of wheelchair-bound people to a game, or putting them up for the night.

Just a couple of years after getting involved in that world, though, my hands started to atrophy and I had to stop playing basketball, then I ended up having to move out of state and got away from the community entirely.

Fast forward to today, where I’ve gotten involved in the disabled world once again (mostly online). And unlike the sports world, where I actually had a little talent. I feel completely inadequate here.

And this is where I’ll break for Part 2, where I’ll go into what it’s like to live with a disabilities that confuse most everyone I know…

Normal is Exhausting

April 6, 2013 | Author: Tam

These days, when I read what normal people get done in a day, I am completely flabbergasted. Over the past couple of years I seem to have finally gotten a handle, for the most part, on how to live my life without causing my nerves to shut down. This is a huge accomplishment, given the state of my nerves and how long it took to figure out how not to tick them off on a regular basis. But living this way means I can’t do more than about 20 minutes of physical work at a time.

(I wrote that above paragraph a number of weeks ago, and then proceeded to get distracted and not finish the post. A number of crazy things have happened in the time since then, and I finally have time to write another blog post, but I love that title, and the opening paragraph worked as a setup to what I was wanting to write, so I’m gonna go with it…please bear with me, as I think this one is going to get long.)

I was going somewhere with that paragraph. I think I was going to say that I’d finally come to a sort of standoff with my neuropathy… I figured out how to give my nerves the insane amount of rest and disuse they require, and in turn they responded by not trying to murder me with pain on a regular basis, and they stopped shutting down randomly for weeks at a time.

As long as I lived in a constant state of awareness of what I was doing, how much, how long — avoiding certain things, measuring every movement, timing every event, what I was moving, doing, lifting, carrying, bending; as long as I took my meds on time, every time, took the extra doses when needed, and used the braces and the pain cream and the mobility aids and the splints at their proper times; and as long as I didn’t get sick, and the weather cooperated at least somewhat — then I was awarded with what looked, at least from the outside, like a fairly consistent and predictable set of abilities. This is something I haven’t had since I was young. Despite finding my ‘miracle drug’ combination (which I discovered years ago and which allowed me about 90% less pain and 80% more functionality than before I found it), and years worth of trying to find the balance, it had eluded me.

But very recently, I seem to have found that balance, and life is so very much better for it. But that balance leaves me in a place where I can’t do much, compared to everyone around me. I know that most people work nearly every day, or go to school, or both. Most adults take care of kids, or spouses, or parents, they’re involved in various social activities, they take care of their home, their yard, and so many other things.

I used to be able to do all these things, though sporadically. I got through school okay, though with many absences. I got through college at Ohio State okay, for the most part, until my hands atrophied and winter came. I gave up on school and managed to work full time at first, and then I dropped back to 38 hours, then to 36, losing about 2 hours every year or two, but still managing to get as much work done as everyone else. I would randomly fall asleep on the job, but I was good at my work and my employers always let me get by with it. At some point I had to give up on working a typical fulltime schedule, but I still worked as an independent consultant as long as I could keep a semblance of a schedule. Then the nerve entrapment in my right arm hit me out of nowhere and my world kind of fell out from under me.

I couldn’t use my arm consistently, and when you depend on your arms for ambulation, because your legs have been inconsistent at best, for years, it’s hard to wrap your mind around what to do. The entrapment came along with an entirely new type of debilitating pain as well, and it engendered a fear in me that I had never experienced before. Combine this new set of issues with more pain meds, bracing that didn’t work, therapy that made things worse, mounting bills, and a vocational rehabilitation department that said I was beyond hope of finding work I could still do, and I was forced to pickup and move cross-country, back to the one place I swore I would never return to. Sigh. In the process I also caused the folding of the company I was a partner in, and massive losses to former customers.

That was years ago, now. It took me another 6 years, or so, to finally come to this place I’m at now. My nerve entrapment turned out to be just another downturn in this stupid neuropathy of mine, I had to learn to deal with it in both arms eventually, though the right is much worse, for the fact that I use it so much more. But I finally learned how to get it under control as well, mostly.

But living this new life, while the sense of accomplishment at having finally found a ‘normal’ I seem to be able to maintain is great, it is incredibly exhausting. But the ability to have some consistency has finally given me the ability to take on some responsibility again, without an acute fear of letting people down, and I jumped at the chance for a Sunday night responsibility at church, which I’ve managed to maintain, missing only one week in the past couple of months. I’ve also gotten all the background checks required to take on some respite care for foster kids. It’s the type of thing where I will probably only be doing it a few days a month, but it’s something. And it feels great to be doing some ‘real work’ again, especially since it’s work that involves kids.

But each new thing I take on, of course, means something else will go neglected. I’ve always been quick to do for others first, and the result of the new responsibilities has been neglect of my personal and home care needs. Fixing this issue will most likely require dropping some things, but I haven’t quite figured out what yet.

And now we’ve come to what I was meaning to write about today.

Not long after writing that first paragraph above, I sprung an allergic reaction to one of the meds I’ve been on for nearly 15 years, and my world kind of fell apart for a while.

It was hard for me to accept the need for medications in the first place, so hard, in fact, that I still have quite a bit of trouble remembering to take them on a regular basis, despite the fact that my pain levels soar as soon as they wear off. I have a mental block of sorts, that tells me that I should be able to handle the pain on my own, I’ve made some progress in training myself to still take the meds anyway, but I still forget fairly often. One would think, then, that the prospect of having to go off of one of those medications would not be panic-inducing, but one would be wrong.

These are not fun meds to take. One messes with my cognition, and seems to have caused some sort of rare water/sodium related disorder that has wreaked havoc with various body systems of mine, and I’m seeing my second specialist now to try to figure that out. The second, I’ve had a vague notion over the years that it’s slowly eroding my iq (though that could be pure paranoia). The third, seems to have recently started messing with my heart, and I just saw a doctor a couple of weeks ago that wants me to try switching to an alternative.

So I imagine it seems silly to people, having heard me complain about these meds, while still extolling their necessity, for me to panic when I find I’m allergic to one, but I depend on all three of these, in different ways, for this state of normalcy I’ve finally managed to reach. And having just recently achieved that, having them all three, at once, suddenly be in jeopardy, sent me into a type of panic I’m not sure I’ve experienced before. Especially when it became fairly clear that the one I was allergic to was the one of the 3 I didn’t have any documented problems with yet, a muscle relaxant for which I was under the impression I had already tried all alternatives for, with miserable results.

So, in any case, after several weeks of dropping doses, steroids, allergy meds, panic, various doctors appointments, various calls to specialists, and getting punted back and forth between various nurse practitioners, the reaction is still not under control. I have, however, switched to a new muscle relaxant, because as it turns out, there was one I hadn’t tried yet. I was not looking forward to the switch, because historically I do not react well to muscle relaxants, and you always have to give them a week or two, while enduring ridiculous side effects, before a doctor will agree with you that it’s just not going to work. This time, however, I have been pleasantly surprised.

I’m still itchy, though not nearly as much as before, and I’m hoping it’s just that the allergic reaction to the old muscle relaxant is still lingering. If it doesn’t go away, I’ll be left with an impossible situation, in which we don’t know whether it was one of the other meds I was allergic to after all, I’m allergic to the new muscle relaxant as well, or I’ve developed an inexplicable allergy to something else that’s consistently in my environment, even though nothing has changed.

My state of panic has subsided, and been replaced with a constant threat of going completely insane for no other reason than that prolonged full-body itchiness is impossible to ignore or come to terms with.

IF the itchiness does in fact go away soon, I may actually end up in a better state than that in which I started. But I’m loathe to say that: when you’ve been hit as many times as I have, hope is a scary thing.

I’ve been on this new muscle relaxant for 4 or 5 days now, though. So far I’ve seen no real side effects, except for a strange kind of lingering achiness in my forearms and hands, which may be attributed to the way I’ve been using them, and testing them for spacticity/tremor since switching meds. My normal requirement for at least 10 hours of sleep seems to have evaporated… I’ve been running on near exactly 8 hours of sleep per night, with one 45 minute nap, one day. I’ve forgotten a dose of this new med twice in that time (I know, pathetic), and both times I’ve been rewarded with severe pain and a most awful return of all the symptoms it’s meant to help, which has subsided within a couple hours of taking it again.

All in all, it’s looking like this new muscle relaxant will be better than the old one. Though it’s far too early to officially make that call, it’s been long enough to say that at least it wasn’t a horrible switch, and I’m okay on it, at least for now.

Amidst all of this panic and fear and mess of the allergic reaction, my niece and her man were hit from behind by a truck that was probably going near 100 mph, while riding a motorcycle, without helmets, and were both thrown. My niece had her back fractured in 5 places (miraculously, there was no spinal cord injury!!), lost a kidney (after enduring a surgery that was attempting to save it), bruised the other, and sustained a concussion and various cuts and scrapes. Her fiance broke his wrist so badly it took them days to find a specialist to surgically set it, and may or may not have had a concussion (he said no but everyone else said yes, lol). The other driver did not make it, as he took out a light pole and slammed through the wall of a building after hitting them.

I cannot convey to you how much it sucks to be stuck dealing with something as ridiculous as a med switch because of an allergy, when one’s niece is rushed to the hospital for this type of emergency situation. I was incapable of going to visit her in the hospital, but the reason seemed so very much less than adequate. I finally did go visit her the day she got released, but I was pushing it, as I had only had a few doses of the new muscle relaxant and really had no business driving that far unaccompanied… but I just couldn’t make myself wait any longer. Thank God they are both recovering okay, though their pain levels are through the roof and it will be a very long recovery.

I’m glad I got to go visit, finally, and I’m glad the change in meds seems to be working out… by the grace of God perhaps this change will end up being a good thing… I just hope this itchiness stops before I lose what’s left of my mind. Please keep my niece, Emy, and Brandon in your prayers. They will both be out of work for a while, and you know how fun it is to deal with insurance companies, hospital bills and creditors while trying to heal from major injuries.

Christmas, Christmas Time is Here…

December 25, 2012 | Author: Tam

It’s been a very long time since I posted a blog entry. It’s not that I haven’t had a lot to say, I’ve just been very very busy. It seems like I’ve been running nonstop since sometime this summer.

The new church is absolutely awesome, and they have a LOT going on. I ended up getting involved with the Christmas play this year, and that combined with all the toy business this time of year has made for one crazy busy season.

In any case, it’s Christmas! I love Christmas, but the business of the season always makes it hard to really enjoy the time leading up to it. I’m always frazzled, and tired, and stressed, and all of the get-togethers leave me longing for large January snowfalls during which I can hide in my house for a week or two of solitary enjoyment lol

But my mom was always crazy stressed around the holidays and it tended to ruin them for us growing up, so I try to make sure that once the holiday actually gets here, I sluff off the stress enough to just enjoy the celebration.

I was so rushed this year, that I was still buying presents in the afternoon on Christmas Eve. This is even more last-minute for me than for most, as we’ve taken to doing our Christmas celebration on Christmas Eve at Mom’s house. Thankfully, though, it didn’t take much searching for the last couple of things I needed. Once I got to my parents’ house I was able to calm myself and enjoy the day. Mom was still crazy stressed out, but she managed to contain it while the kids were here for the most part.

Now, I know Christmas is about Christ… I don’t do the Santa thing, and I don’t forget the true meaning of Christmas. But I spend all year celebrating Christ, as do most of the people I know, including most of my family. I never get overly excited about any holidays, really. As far as Christian holidays go, though, I am drawn much more strongly towards Easter than I am Christmas, it just feels more natural to me to celebrate Christ’s sacrifice than His birth. His birth — miracles, signs and wonders, notwithstanding — was the easy part. I’m not sure anything we can do now really compares to the celebration God orchestrated around His birth, anyway. God put on quite the show, and I’m not sure we add much to it with our lights and songs and historically inaccurate nativity scenes.

So while I love revisiting the story, it just doesn’t seem as much of a holy day to me as Easter does… I mean, December 25th was picked by the Roman Catholic church to line up with a pagan festival, Jesus was more likely born in September than December, so I’m a bit ambivalent about the celebration as a whole. Giving up His life… now that’s something to celebrate. So while I get really deeply emotional about Christ’s sacrifice come Easter time, at Christmas I find most of my enjoyment in giving and spending time with loved ones.

So, with all that out of the way, it’s been a great Christmas so far!! It’s still a little weird to me opening presents Christmas Eve instead of Christmas morning. We’ve had to adjust all of our traditions in recent years because the family just got too big and with the kids all getting older and starting families of their own it was too crazy trying to fit everything in.

I got a totally unexpected gift before anyone else even got here tonight. My parents got me a new digital camera!! It’s really nice and has all kinds of crazy features… it’s got one setting that takes a picture automatically when someone smiles, and another setting just for taking pictures of babies… I’m going to have to read the book before I figure out everything, but I checked it out a bit and started using it tonight, so I’m hoping some of the photos came out at least lol. At one point I got the flash stuck off and couldn’t figure out how to turn it back on for a while, so I’m not quite sure what I ended up with. My old camera was one I got used, and it still works, but it’s a very old model and I’ve been taping the battery door shut for months. So I probably annoyed everyone playing with my camera tonight but I don’t really care, I just hope some of the pics come out lol.

We had a nice Christmas Eve service at my parent’s church. My oldest niece sang a special with a friend from my old youth group playing backup on flute (you did great, gals!!). I got to sit with my adopted grandma, AnnaLee. She’s not been feeling all that well lately, so it was nice to get to spend some time with her. She gave me an unexpected gift as well. My pastor’s kid, David, who I used to babysit for, blessed me with a hand shake (he’s developmentally disabled, and I’m never sure if he really remembers me or not, but he grabbed me as I was going by to give me a handshake tonight. :) I also got to talk a bit with several other older church members I don’t see often.

Then it was home to the craziness of Christmas, I think there were 20 people here all together. We pigged out on all of our favorite snacks, sang happy birthday to Emy (she’s a Christmas Eve baby, it’s hard to believe she’s 23 now) and then headed down for presents. The best part of the whole celebration for me is watching the kids light up when they get a gift they like, and we were not disappointed tonight. Some of the cheapest gifts ended up getting the biggest reactions — that’s kind of the way it always goes.

Charlie (2) loved the second-hand sit’n'spin I got him, and has already figured out how to flip it over and turn the sound on and off. He also latched on to one of the balloon noisemakers I gave the kids, and a little light up ball Mom got him. The older boys liked the foam knives I made for them, and the 3-in-1 measuring tapes, but the noisemakers were a huge hit with them as well. I think Jonathan was most excited, though, about the jeans Mom got him. Brittany was most excited about some fuzzy socks, Kaycie a webkinz puppy, and Samantha and Katherine seemed to like the art kits Mom gave them, best.

I was surprised yet again, this time with a new drill from Mom & Dad. I also got a ginormous tin of cookies from my sister’s family, some adorable hand-made pot holders from my niece, a s’mores kit from my brother, and a few other little things from Mom & Dad.

I get to pass out the presents, and the little kids always crowd around the front, so I usually miss seeing the older kids and the adults opening their presents, but as far as I could tell a fun time was had by all. There were a lot of smiles, very few tears (Charlie was very tired and wasn’t feeling that great, so he had a rocky start, but cheered up by the end of the night), no fights (considering how holidays generally went when I was growing up, the lack of fights is still a big deal to me :), and no one was too sick to enjoy the evening. An all-around win as far as I’m concerned.

I do wish Fred could have been here… I got used to spending holidays with him and I miss him most on the holidays… but we sang a Christmas song together and opened our presents from each other over the phone last night. It’s funny how well he knows me… he got me a great gift (a new fuzzy panda blanket), but he knows me so well that he gave it with a stipulation that I have to actually use it, I can’t just put it away somewhere so it’ll stay nice (which I totally would have done!)… he knew I’d follow the rules if he laid them out like that, and sure enough I got the blanket out and used it this morning to shew away some chills when I first got up lol

All in all I got way more than I was expecting this Christmas, and there’s more to come tomorrow. But above and beyond all the “things”, I got hugs and smiles and happy memories from happy munchkins, and my newest great-nephew Carter blessed me by sleeping in my arms for a while. It doesn’t get much better than that. :)

Let the munchkin-proofing commence

June 16, 2012 | Author: Tam

I do my best to try to write a blog entry when I can tell I have too much to say and will end up getting spammy with all of my facebook updates. I believe I’ve failed that attempt this week. I’ve just been in too great of a mood and I’ve had way too many things going on. I think my last blog entry just added to the facebook spam. Oh well, those that know me very well should be used to me talking (and talking, and talking) a lot by now.

This week just keeps getting better. I think I last posted here on Monday night, so I’ll pick up from there and give you a quick overview of my week. I’ll highlight the high points in case you want to skim. I mostly write these so I can look back on them later, anyway.

I recovered pretty quickly from the all-nighter I pulled Monday waiting for the contractors, which is a rarity for me as that usually hits me pretty hard. Tuesday I was able to go to the Y and exercise again, I’ve actually gotten there several times over the past week or two, so hopefully it will be an established habit soon. I discovered more exercise machines I can actually use (which was unexpected, considering I can’t use anything that requires me to use any muscles in my arms, below the elbows, or any muscles in my legs besides inner and outer thigh). I had to up the weight on the inner/outer thigh machines already, and did an extra set of reps to feel like I was getting a workout! I even managed to swim without the swim paddles I need — that I can’t afford quite yet — without damaging anything.

I went grocery shopping from there, something I haven’t really been able to do much of lately, found some great deals and got my pantries and freezer pretty well restocked. I was sore from the workout and barely managed to get the cart to the checkout, but I pushed through (forgive the pun) and managed to get everything put away before I crashed.

I scheduled Wednesday as an off day because I knew I’d been overdoing it, and I knew I had to have energy for Thursday. I’m glad I did, because don’t remember much of it. I know when I got up my scale showed me down 5 lbs from the weight I was unable to get below last time I tried to lose weight (I’ve been eating differently but I wasn’t really even trying to lose weight this time). I think I spent some time highlighting my Bible — I’m slowly trying to migrate my highlights and notes from my old trusty torn apart Bible to the new one. I think I spent the rest of the day just basically vegging.

Thursday I went bowling with a family from the new church and another mother and her daughter. I was good and didn’t bowl — I love bowling but it put my arm out of commission for weeks sometimes even before this issue with the nerve intrapment, so I dare not try anymore — but I got to hang out with 5 kids, 2 teens and a couple of adults while they bowled their first game, and then Penny (the mom of most of those kids, who’d invited me) played a game of air hockey and two games of pool with me while the others were either watching us or still bowling. I had an absolute blast, and I think everyone else had a great time, too. I even got to play a couple of games of skeetball before we left. We went to McD’s afterwards to grab a bite to eat and then on to church. Mike, the 14 yo, who’s a pretty cool kid, rode in my back seat to both places (I really have to clean my car out, there wasn’t room in the front), and we talked the whole way.

Thursday evening’s service was great as well…

There were a lot more people there than last time, I think because they had some special musicians in that evening. But even with all of the other musicians there I didn’t get 3 rolls in the door before someone asked me if I was going to sing again, and that question was repeated by enough people that I lost count. At least a couple of people who hadn’t even been there Sunday came up and told me they were looking forward to hearing me sing because they’d heard someone bragging on me. I was a little uncomfortable with all of this, but my normal awkwardness didn’t even get a chance to come out, because I was still bubbling over from the great day/week I’d been having. (Later that night I found myself thinking, “wait a minute! All that hugging and hand shaking and talking to people and I didn’t even freak out!” lol)

After a few congregational songs, something told me I should try to do one of my personal favorites (Hail, Hail Lion of Judah!). After a quick check with one of the ladies to gauge whether the people would be willing to play “repeat after me” on a praise song, I went ahead and got permission to do two both songs (it was made clear I had to do an encore of the song I sang Sunday as well). With that many people there, almost all ready and willing to learn the song with me, it went incredibly well. I’ve taught/sang that song at several churches, and I usually get a few to sing along, but the entire room erupted here, and it reminded me of “home”. The Spirit was in it and I think everyone there got a blessing, I know I sure did.

My voice was tired from talking all day by the time I got to my song, so I don’t think I sang it as well as I had Sunday, but the Spirit was still strong, and I believe a number of people were blessed by it as well. The other musicians did a great job (including one little girl with an impressive set of lungs and an awesome voice) and the Spirit was with them as well. Then the pastor’s message was great, inspired, spot-on, and needed, and it touched on some of the things that Mike and I had been discussing earlier in the car. We spent quite a while in prayer, peppered through the service, and we didn’t get out of there until around 11pm. That’s my kind of service, the kind where you let God have his way and stay until He’s done :)

I went up to encourage the young singer afterwards and kind of got blocked in, so I was one of the last ones out the door, and ended up talking to people in the parking lot for a while before I left. Before the night was over I’d asked about (with some prodding from Mike), and given a tentative commitment to helping with their VBS program in July. I don’t know what I’ll be doing but I bet I’ll have fun! :)

So I got home near midnight, and didn’t remember until about 2am that I would have to be up early in the morning for the contractors that were coming to work on my door. I tried to pull an all-nighter again, so I wouldn’t have to worry about whether I’d actually wake up when they arrived, but I lost the fight around 6am, and woke up just in time to see the contractor’s truck leaving my driveway. Thankfully, he called a few minutes later to tell me he would be back shortly but his workers had gotten lost and he had to leave to go pick them up. Disaster averted, I would have been SO mad at myself if I’d missed them, after trying to get someone to do this job for nearly a year.

Contractors working on my rotten door frame

this is why I was trying to get this worked on months ago

The job took them most of the day, because of more water damage than they’d expected, and having to chisel an old door jam out of cement (whoever put that door in was not bright). I ended up sleeping through large portions of the work, I slept through chiseling, hammering, drilling and power saws, all feet from where I was sitting lol

In the end I *finally* have a new sliding glass door on the back of my kitchen, and a new entry door on the attached garage. He didn’t end up charging me any more than the original estimate (which I was worried about because of a misunderstanding and the extra work on the water damage). There are a few finishing touches and a couple other things I need to pick up, but he’s coming to finish up on Monday. Since this contractor actually showed up, and seems to have done a good job, I actually have someone I can call the next time.

He also gave me a really low quote on what it would take to get a dishwasher installed in one of my cabinets, so I just have to find a way to round up the money and maybe I’ll be able to do that before too awfully long. Doing my dishes by hand is incredibly hard for me to do these days, if I could manage to get a dishwasher installed my stress levels would drop significantly, plus I’d have the energy to do other housework that ends up never getting done right now.

They got done just in time for me to get ready and head to church at my regular church. We had a good service there, and Vivienne showed up. I hadn’t seen her for a long time, and was glad to catch up a bit. Afterwards, I swung by the park and caught the tail end of a baseball game between the youth and adults at the new church.

So combine this with the last post and I’ve had quite the spectacular and busy week, and I’m not sure it’s over yet.

This coming week I have a date on Wednesday to take my friend Hunter (and maybe his mom) to Skyline Chili for kids’ night. I also have to child-proof and clean my house, and I have to try to find a way to get my schedule moved back around to something approaching normal hours, because the week after next my friend’s preschooler, Kayley, will be coming to hang out with me. For now, I’m going to go see how much sleep I can get, lol.

Goodnight world.

Answered prayers and such

June 11, 2012 | Author: Tam

I know I haven’t posted anything here for a while, but it’s not exactly for lack of trying. I have at least 5 posts I’ve been trying to write but I just can’t seem to get anything to the point I actually feel comfortable posting it lately.

I’ve been in a bit of a funk the past few weeks (okay, that’s a massive understatement), but I believe yesterday evening was a huge turning point for me.

I’ve been checking out a new church lately (while still going to my current one — I love those people dearly but the church just isn’t accessible, and I don’t feel like it’s a place I can really be used), I’ve been there 3 times now and yesterday the pastor’s mother took it upon herself to make sure that I got to sing. I sang one of my own songs that I haven’t sang in public for probably a year or more, and it went really well. God seems to have touched nearly everyone in that service through my song, I had people chasing me down to make sure I knew about it, too. I’ve never seen a reaction that strong before, and the timing was great, I really needed the pick-me-up.

After that, the pastor’s sermon hit me just right, I’m not even sure what he said exactly, but it was just what I needed to hear to finally let go and step out on faith on a couple of things that have been holding me back for a long time. To top it all off, one of the ladies invited me to come join a group at McD’s after the service, and we sat there talking until they kicked us out at midnight. If you know me very well you’ll probably be able to pick out about 7 answered prayers in the past couple paragraphs.

After I got home I pulled an all-nighter, I had some contractors due to come install a new door and I didn’t want to sleep through it (which is the only bit of bad news in this post, it started pouring down rain around sunrise, and they had to postpone til Friday). While I was up, I managed to get about 20 more songs recorded for the Praise Songs Database, and I actually got them updated to the site, along with a bunch of updates I’ve been putting off for months.

Then I made a couple of phone calls — I got resolution on one issue that’s been seriously stressful for me for the past 2 months, and I made the first step in finding a solution for another issue that’s been a huge stressor for years now.

So all in all this is shaping up to be a really awesome week, here’s hoping the trend continues, but even if it doesn’t I think I’ve had enough blessings to carry me for a little while.

Memories

May 7, 2012 | Author: Tam

I usually tell people that I don’t remember much before I was 8, and leave it at that. The fact is, my personal memories are pretty spotty no matter what age. I like to think of my collection of personal memories as a hunk of swiss cheese, fairly stinky, with a flavor that’s tolerable at times, but really doesn’t taste good, and is full of holes.

I’m sure that over the years I’ve internalized some of the stories I was told about my childhood, to make up for the lack of memories, so the collection may not be all mine, but I’ve been reminiscing a bit today so I figured I’d share some anyway.

I went through a phase where I refused to wear a swimsuit. People called it a bathing suit. You don’t bathe with a suit on. You bathe naked. I wasn’t going to wear a suit to take a bath, and just because you suddenly decided to start calling it a swimsuit doesn’t mean it’s purpose has changed. Seeing as how I spent half of my childhood in swimming pools, I imagine this was a huge source of exasperation for my family.

I had a nightmare when I was 4 or 5. One or both of my siblings was trying to steal my purple bubble gum from the top right drawer of my new yellow dresser. I remember waking up to tell Mom that. I remember being laughed at, even though I was upset and hurt. I remember checking and finding my purple bubble gum was, in fact, missing. I remember no one caring. That’s my first and clearest memory from childhood.

I have a picture somewhere of my preschool class. I was wearing a purse. I found the purse a while back and put it in my toybox here for visiting kids to play with. When Mom last saw the picture she chuckled and said something like “yeah, the teacher was exasperated because you always wanted to answer every single question and wouldn’t let anyone else have a turn”. I don’t really remember preschool, but I remember being told to let other people answer… but the teacher kept asking “does anyone know…” so I kept raising my hand. And if she asked us to call out answers I did. I didn’t know what they expected, I wasn’t going to pretend I didn’t know, when I did. I wasn’t going to lie, and I didn’t want people thinking I was stupid just because the teacher didn’t like me knowing everything. It’s not like she had to call on me just because I raised my hand.

My favorite toy was the sit’n'spin. I would spin as long as I could, I’d get dizzy, fall off, give myself a moment to recover, then go right back to it. I believe I had to be forbidden from riding them, because I kept trying long after I was too big to manage. I also loved yoyo’s and spin toys and swings and pretty much anything else with perpetual motion.

I spent a lot of time in Dr offices, because I fell all the time. If I wasn’t injured again I was seeing yet another specialist to try to figure out why I kept getting injured. Mom used to take her knitting and I took my sketch pad. An artist I was not, but I liked to try to draw things as true-to-life as possible. I was great with fish tanks and still life, I was okay with animals. I failed miserably at drawing people. I couldn’t draw a face to save my life. It drove me nuts.

I liked numbers, and I made a game with myself to memorize them. I had memorized most of the phone numbers I’d ever heard, and on the way into building I’d often take note of a license plate or two and see if I could remember them on the way back out. Somehow Mom figured out I was doing this at some point, so she joined in and would quiz me on them. Of course, she didn’t write them down, and couldn’t remember them herself, so she never would have known if I was wrong.

I used to wear jean skirts all the time. One day on the way home from the bus a girl from the neighborhood thought it would be fun to pull my skirt up. I stopped wearing skirts after that, for the most part. Any piece of clothing that offers so little protection that a split second decision by a bully can leave you walking down the street with your underwear flapping in the breeze is just not practical or decent. Considering how often I was falling, I think that incident just drove home the realization that skirts were not for me.

When I was in the 5rd grade I was put in a classroom on the third floor. My 5th grade teacher had been my 3rd grade teacher previously, and she was a great teacher then. But the third floor meant stairs after stairs after stairs. 3 flights up, three flights down, up in the morning, down for recess, up for class, down for lunch, up for class again… all of those stairs kicked off the initial exacerbation of my peripheral neuropathy, but we didn’t have a diagnosis then. I just knew that I was falling, a lot. And every time I got one injury healed I’d get another. Those stairs were hard for me, and it broke my heart when the teacher I loved sneered at me and said “come on, granny” when I took too long getting up the stairs one day. She later got mad at me for having to use crutches once again. I think she thought I was injuring myself just to punish her.

Rounding drove me nuts. Not because I have a problem with rounding, but because people tended to do it in the most bizarre circumstances. Ask someone what time it is, and they might say 4:15 or “quarter past 4″. It may be 4:12 or 4:20, but somehow it made sense to them to round it to 4:15. It never made sense to me. You don’t save time by saying 4:15 instead of 4:12. Over the years I’ve learned to make these strange conventional roundings by habit, and to get a feel for when people want them, but it always seems bizarre to me. I most especially remember driving my ex-sister-in-law nuts with this issue. When someone asked the time, and she rounded, I always felt the need to let them know the actual time. I couldn’t understand why she had to round. She couldn’t understand why I didn’t understand that rounding was correct.

I have always preferred to be on the outside looking in. Especially where people are involved. When we had large family gatherings I used to hide under my grandpa’s old desk. I’d pull the chair in after me so no one knew I was there. That way I could just sit back and listen to the muffled sounds of the hustle and bustle of a large family gathering, without being accosted by it. I felt safe there. Usually a cousin would eventually find me and assume I was playing hide-and-go-seek, and then my fun was over.

At my other grandma’s house I used to love to sit up on the stairway and listen to everyone downstairs. We played a lot of board games there, and she had these little plastic containers that she kept the marbles and dice in. We used to shake them because the sound was cool. I think my favorite sound in the whole world was hearing someone downstairs shaking one of those, and the sound echoing up through the stairway. I also loved the sound she made when she was ‘shuffling’ her dominoes on the kitchen table.

I did not understand why people cried at movies. The people on tv, on screen, in fictional books, in plays, were just acting. I got this concept, but no one else seemed to. They wanted me to cry after watching sad stories, but they were stories. They were not real. Why should I get upset over something that someone made up? So they kept trying. They kept showing me sad movies, this one will make you cry. But it was just a made up story, too, there was no reason to cry. (For the record, I now cry at the drop of a hat, but that’s another story.)

When I was in 6th grade I had a nerve biopsy. The nerve conduction studies were enough to make it clear that I had a peripheral neuropathy, but my symptoms did not match my test results, and they were baffled. They wanted to study me, so they convinced us to let them take a hunk of nerve out of my ankle. It wasn’t hard to convince me, I got the doctor to agree to setting up a mirror so I could watch, that was all I needed. It was cool to watch, especially when my nerve wasn’t even in the right place and he had to dig around for a long time to find it. He showed it to me afterwards, it looked like a fat piece of spaghetti, shredded and bloody, stapled to a popsickle stick and stuck in a jar. Unfortunately, he wouldn’t let me keep it.

My guidance counselor at school apparently decided that that was a good time to talk to me about the whole disability issue. I’d moved schools several times because of it. I’d had special notes for gym for years. But apparently they just then realized maybe I needed counseling, so she called me in to talk to me. I think she asked how I felt. I responded “weird” because that had become my stock answer. She questioned me further and I explained that everyone is weird in some way, some more than others. She asked about my best friend, I assured her that Jenny was weird, too. She eventually asked if I thought she was weird, I believe my answer was “YES!”. She never called me in to talk to me again.

Tam's Ramblings

Advocacy and Inadequacy – Part 3

To a man I used to respect…

What’s your ideal church service?

Advocacy and Inadequacy – Part 2

Advocacy and Inadequacy – Part 1

Normal is Exhausting

Christmas, Christmas Time is Here…

Let the munchkin-proofing commence

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