1) It's official, my spine is crushing my right lung. This is incredibly bad, on so many levels I can't even begin. This is serious. It's causing a chain reaction of bad with my breathing, and this makes sleeping difficult, energy low, etc. This is the aftermath of the botched spine surgery in 1991.
2) I've been more nervous about a girl than about my health lately, I just haven't told anyone this because the lame listlessness and indecision of unspoken infatuation unrequited gets as tiresome for me as it would for any of the population that may hear it, I figure. dammit, here it goes all over again, lol.
...fell for her words on her blog, very caring and compassionate and open and understanding and political and level-headed and we've talked some over IM and then saw her in passing in person in school .....her major is english, like me
...... more i learn about her, the more she seems like me...
terrifying situation...everything i've carefully tried or not-tried up this point has failed, i don't want to fail again.
What can be done about your spine? Is another surgery inevitable or wil that just potentially make things even worse? What options do you have, if any?
Its really hard to invest a lot of energy into someone only to have them not willing to invest the energy back. I think you need to take that first step with a girl sooner - before you have her built up in your mind as this perfect girl for you.. In fact what you probably need to do is to try to date just any girl -someone who makes casual eye contact with you -just to do it. You build this dating business up to this monumental thing -when what it needs to be is casual and risk-free. You date this girl and she rejactds you and your heart is broken. You need to date girls to find out if you like them- you need to date both girls you wil fall for and ones you wil not - you need to have successes and failure and be able to get rhough them both.
Now what you are doing is carefully crafting a tall tower out of blocks. You keep putting more and more blocks on and make the tower taller and taller - and you are not getting a strong enough base - so when you add on that one brick -it topples over. You need to make a lot of small solid short brick buildings before you work on a sky scraper. Some of the small brick building will look like crap and some will be ok, and some will be worth building up taller.
About my spine, it is debatable whether I'd survive such a surgery.
I am having a very disturbing, bizarre year.
What is really living? It's the freedom to be who you are. I don't have that, so while that saps me, makes me feel I should die or already am dead, the undead, I've still got so much feeling and love for people, it fuels my activism and is who I am. I've always been that.
So I'm not undead, I feel more and am more alive than anyone I know.
When people go out on dates it used to be traditional for men to drive women, but no more. Ask her out and then get the keys to the van and have her come to your house- then drive.
People will accept what you expect them to accept. It migth be ackward - but all dates are.
i think that there is a big difference between living and exisiting. i just try to remember to live, and live every day, even on the days i can't get out of bed. sometimes the computer is my only outlet, but i make sure to live through it, and get out when i can.
It seems that, in life, we always want to be somewhere that we aren't. We aren't happy at work, not happy at home, maybe not happy anywhere. We always think it's better elsewhere. It's basically human nature...I think that we are trying to leave our troubles behind or just looking for a change.
I used to leave work, anxious to come home for lunch cause it would be good to be home. Then, when I got there...ho,hum, time to go back to work. Work seemed so much better when I got back.
It was my imagination telling me home was better, when maybe, it wasn't. Or it was just maybe the change.
When we are driving, we see this gorgeous hazy, blue mountain in the distance...oh, how wonderful it would be to be there and climb that mountain. Then, when we get there, it isn't that much better than where we were. The blue we saw in the distance is actually green pine trees...the same that lined the road when we originally saw the mountain. It was our perception that told us it was better because it looked better.
We want to go to the seashore. How nice it would be to get away from work to see the ocean pounding; the rolling surf and smell that salt air.. Then when we get there, it sure is beautiful, but after a little while, it all blends in and we become used to it. It also could be cold, rainy and windy when we originally imagined sunny. People that live at the seashore might want to drive to the mountains. They imagine that the mountains are better.
It's the perception in our imagination that makes going somewhere so magical; not so much the place itself. The fantasy of just getting away from what's considered as normal, drives us to explore something different. People that travel and see the country, are almost always glad to be home; a place they originally could not wait to get away from.
For those, who are bedridden or cannot go to these places, your imagination is what you must use. Picture those beautiful places and you are magically there. The trip in your mind might be better than the actual trip itself. The only limit is your imagination..think it and your there. Try it. Imagine the road, the road signs,the shadows, the mountains or whatever you choose.It's so real, isn't it. It was good to get away, wasn't it.
Gregorio, I'm too stubborn to concede that I "cannot go to these places."
If you were me I doubt you'd be content to admit you can't and just use your imagination. It runs counter to human instinct, and especially my own intense, dog-with-a-bone tenacity, which I would've died long ago without. Whether I am ultimately strong enough to beat down the thousands of barriers remains to be seen. Right now, I feel very weak.
Letting go -- I've never been able to -- especially since I get such conflicting outside messages about myself.
Sometimes I have great confidence, but usually I'm believing the information I'm bombarded with that I'm not on the radar -- the unbroken months of isolation, sickness, no support, burned out family who blame me, no ability to get out there, me sitting between two girls I know at school and them bemoaning that no guys they know are suitable, etc.
Will keep trying. I'm physically incapable to not hurt when I'm stabbed, not to fight and try to succeed. I'm really hurting right now and more depressed and weaker than in years.
To give the proper background so you understand this post, I must explain that when I was 9 years old, after a surgery that went terribly wrong on September, Friday the 13th, 1991, when I had back surgery to put rods in (unnecessarily it turns out) I developed a ranging psudomonas infection and all the abilities I had before I soon lost. I got down to 35 pounds. Many doctors said I would not live. I didn't believe them and I lived. In 1994, I was trached and put on a ventilator. My maternal grandmother - Nana - retired from a 27-year career as a high school drama teacher (play director) in North Carolina to move down here to help with my care. She boankrolled an addition to our house to give me a larger room to fit all my equipment, and make her a bedroom/bathroom/kitchen suite right adjacent to my room.
She is a complex and wonderful character. She is incredibly strong-willed and stubborn, like an unstoppable fire. In her birthplace of Columbia, SC, she worked with civil rights groups to further integration back in the 1960s back when that sort of thing was considered more than radical. After her and her husband divorced in the 60s, she went back to school at the all-girl's liberal arts college Columbia College, while juggling care of two elementary school kids, my mom and her sister. In the 80s she was very active in Democratic politics, a delegate to the North Carolina state convention and "Caldwell County Democratic Women of the Year 1988." She cherishes the mispelling implying she is multiple women, and wouldn't let them change the inscription. In 1990 when her severe spinal stenosis completely debilitated her, she had to have surgery. To stave off boredom during 6+ months of bed rest, she took up playing Nintendo. She returned to work but in 1994 retired to move here to help take care of me.
Here in Alabama it's "if PAs can do your care, you do not need Medicaid," and they end all care for that person. Those under 21 must repeatedly prove medical neccesity for nursing or get nothing at all. This is done intentionally to cut costs. Nurses are very tough to find with $11 an hour here when there are so many hospitals and nursing homes, in this, AL's 2nd largest city, paying $15. So we've had a lot of incompetent, abusive nurses. On many occasions Nana has heard my ventilator alarming to rush in, finding me suffocating and blue with a nurse either asleep not hearing the beeping, or unable to figure out where the tube came disconnected. Nana and Mom have been my safety net saving my life on countless occasions. Since they can't staff night nurses since about 1996, then Medicaid hours were slashed to 16 in 1999, Nana has filled the 11-7 night shift gap, listening to me with a monitor from her bed playing Nintendo, jumping up to turn me, give medicines, help me with the urinal by night, and sleeping during the afternoon and evening.
This year, relying on Nana and Mom has grown more difficult, and not just because I'm burning up inside to break free and be independent, but also because Nana, who has used a rolling cart to walk for years and now at age 70 is having increasing difficulty, pain with her spine. She's gradually losing the ability to walk / stand much without it being unbearable pain, and sometimes will blame me when the care, turning me is difficult for her. It seems tension is common lately. Mom is having difficulty moving too and lately there's more tension there too. It gets bad sometimes.
Today there was a bad situation. Mom took over for Nana at noon, and Mom was supervising both my brother Jamie and I. She was sleeping in Jamie's room with the monitor listening to me, I was sleeping in my room on my side; it was a very normal Saturday. I woke up, and I needed to turn off my side - my hip was sore, and I had to urinate. I turn often enough that the entire time I've been disabled I've not had any sort of skin breakdown (Christopher Reeve died from an infected bed sore). Anyhow, so I yelled for help. And yelled. And yelled. And yelled. No one heard. Then I held my breath to make the ventilator back pressure with air and alarm so Mom would hear the alarm and come help. I made it beep. Again. And again. Then finally holding my breath to hold the beeping solid for a minute, that got Nana, off-duty and trying to sleep, to come in here. She got mom, who, exhausted, had slept through the yelling and beeping. This scared the shit out of me, but similiar things or worse have happened with nurses. My friend Chris died because his Dad slept through the exact same loud alarm sound. The only difference was that Chris was beeping because his ventilator had disconnected and he was watching himself asphyxiate to death, while I just wanted to call for help.
Later tonight, Mom brought it up to me that "if you lived on your own no one wouldve heard you at all today." I replied that I wanted to be living with a live-in attendant, but it seemed a weak argument. Her fears rang true. I am also very concerned whether or not I can construct a safety net of supports adequate enough to not kill me outside of the home.
Unfortunately, Nana had overheard this brief argument, and later in her night shift I said to her the normal everyday conversation, "hope mom gets some rest" or something, and Nana comes back with nasty contempt, "you won't have to worry about that when you get your apartment."
"Better get used to screaming unheard."
Arguing with her would only make living here more difficult, so I stayed quiet. If nothing else, I know how to survive. I'll continue to quietly push for independence, though I don't know it's possible.
I rarely talk about what my life is really like in this level of detail, because I don't like to. It's not pretty. But I feel I had to explain the gritty realities here.
I need you to tell me, is it possible, this dream of independence and belonging? I need you to tell me, is there any reason I should feel any remote sense of hope?
Perhaps no one can answer this but me. But yes, I think you have hope if you get out of Alabama. You need to come north and or east or west and live in a place where community health services are better ( I am not about to say good- because I don't know if that exists.) You need to live where their is a vibrant disabilty community. You need to live somewhere where getting out is a possibility - because only if you get out will you have a circle of friends who can support you. You might be able to get a circle of friends in Alabama to help - but you don't seem to be able to make much progress there.
If you lived in a community where there were others like you who needed support, you would be able to live with someone who required the same or a similar level of support as you do. Or perhaps live with someone who needs a different kind of support that you in fact can partially provide.
What I have often perceived as a potential situation for Teddy is to find a person with high physical care needs - but is able to handle the day to day task of keeping the intellectual aspects of a household running ----paying bills, assuring there is enough food in the house, making sure the garbage is put out, reminders to keep the house clean, knowing that door to door and telephone salesman are to be ignored. A crucial aspect for Teddy in this, is that the person with high physical care needs is able to drive - which Teddy cannot. Otherwise you two could make a good pair.
A person with a cognitive disability could turn you, help you with personal care, dress you, replace your tubes if they fell out, and with assistence run the household.
Now it is obvious that one roomate cannot do all you require - but this would atleast cut down tremendously the amount of asssitence you do require.
So either you have a third roommate or help that comes in. Perhaps a person who is blind or deaf who feels insecure living alone. A person who was deaf would need special signals that vibrate in addition to make a sound for your alarms - but it could work. A blind person couldn't drive, but everythingelse you need they could do.
In Alabama there is no network of people you canjoin with to accomplish indepependence - or perhaps more accurate semi-independence.
Your Nana and Mom are not going to be able to provide you the level of care you need all of your life. A day wil come whenneither of them can do it. You are not unlike the adult child with a cognitive disability whose parents have cared for them and sacrficed for them all of their lives and never created a safety net for after they were gone - and they die and the adult left behind is in a major crisis with no good choices for a solution. You don't want that to happen to you, and your Nana and Mom don't want it either. They have sacrificed much of their life for you and it feels like a smack in the face that you want to walk away from that. But it is better that you walk/roll away from them when you can with their support, then be left alone calling 911 because your Nana has collapsed and your Mom is so exhausted she isn't waking up and you helplessly watch as she dies.
When your mom chose to move to Alabama it probably made good sense. But it does not make good sense anymore for you to stay there. Either your family needs to go elsewhere together - or you need to go alone. Your long term survival depends on it. Your independence depends on it.
Nick
Your only other choice is to dramatically increase the amount of voluntary support you get from the community.
You are in a very very tough place - emotionally, physically,and logistically. I hope most dearly that this coming year will be better than the last - in fact better than all the years before. I hope that this will be the year you find your circle of friends and needed supports to start living more independently.
Much love,
Susan
Clay (no login)
Re: Family troubles
December 19 2004, 2:18 PM
Nick, reading your story made me realize how difficult things have been for you, for practically your entire life. Surgery after surgery and all of the time spent in a recovery bed. I have been very fortunate so far as to never need to spend time in a hospital room. I can only imagine how frustrating life must be for you.
I think your Nana is also getting qutie frustrated at the whole situation, because at her age, she will eventually need someone to care for her and not be able to take care of you. When my disabled grandmother was living with us, we used to help her out in any way we could. She died a few years after leaving our home, to live in an old age home.
One thing is for certain though, no nurse could ever care for you as good as your mother would, even though she may get exhausted and fall asleep and not hear your alarm beeping.
Clay
This message has been edited by Xuxan on Dec 19, 2004 2:41 PM
I edited out two parts. One because you didn't read Nick's post well and what you posted was if he had said exactly the opposite of what he did say. And the other part was because your idea was not one that I want to be posted online.
Susan
Clay (no login)
Re: Family troubles
December 20 2004, 7:29 PM
I still don't see why you didn't post the part ........
Clay,
Because Nick's life is very serious and your suggestion would be taken very seriously.
Susan
This message has been edited by Xuxan on Dec 20, 2004 10:32 PM
1) A few weeks ago I convinced my VR caseworker to push to get funding for 8 hrs attendant care / day.
2) I'm starting a book project about the long-term care stories in Alabama. It will present the stories of chris, lauren, patrick, rusty, aaron, others, and it all tied together with a braid story of my crusade........framed with that. frame story. i'm sick of chris and others being just a number, a line item on a budget column that they just hit backspace on and delete like balancing a checkbook in Quicken. this will show the human face, his story. that he was a talented writer, with a mohawk, and lived and breathed heavy metal. It will also expose medicaid for their tricks in defeating my bill, and will examine the moral, cultural and political issues surrounding health care and social programs in the South. I think I've got enough connections to find a publisher. Also I will use this as my senior project.
3) I was in yesterday's Mobile Register. It was a tiny update; the text beside the photo of me very briefly quoted an email alert I wrote last week attacking the newly unveiled Bush proposal to eviscerate Medicaid funding. I am going to fight. Impressive that 2 years later, I still get press.
3) today mom crumbled under the pressure, couldn't take it anymore, called and told the nursing agency she can't handle the understaffing, telling them i could die like chris if she keeps that level of exhaustion up -- she is right, telling agency they gotta find more help or we'll have to switch agencies, then mom crying and arguing with evil nurse betty about switching agencies, because betty would basically have us suffer rather than change what she is used to. it's been a scary day, with several weird PSTD reactions I rarely have. my bed is covered in my sweat.
DAMMIT, if I am strong enough to beat Medicaid on their home field and force the starting of a new waiver during a budget crisis, strong enough to be in the paper 2 years later, than I am strong enough, deserving enough, to have a life not filled with fear of my own support people. the oppression I still live under is fairly extreme.
4) a change in agencies could be the best thing to ever happen. evil staff would not follow us. I really hope this happens.
5) we are moving fast to, for the first time ever, hire a student attendant for Friday. I wrote the chair of the nursing division for recommendations; I am also guest lecturing for nursing classes this semester. Guest lecturing for poli sci as always.
6) my apartment should be available in 2-3 months. don't know if supports with safety can be arranged.
Sounds great Nick! Looks to me like you are turning a corner. Your Mom was very brave and did what she needed to do- congratulations!
I dearly hope you have more luck with a book publisher than I have. I'm still looking and the book is ready for a complete revision with all the new stuff that has happened in our life since Teddy turned 18.
to help 22-year-old student who is wheelchair and ventilator-dependent live independently and be included in college life. Needs assistance with driving van to social events and basic personal care, including assistance in bathroom. Opportunity for fun and gaining experience in the logistical and social aspects of disability for an engaged, responsible person. Will train and pay $10 / hr for 8 hrs on Friday nights, with possible option for more. Call #
Hoped at least one of my two nurses would switch agencies with us, then it would be doable
... but they united against it since the other agency's insurance costs more.
This past semester was bad -- i missed two weeks just because i somehow crossed the tightly-drawn box of lines and she got mad and called in. And then i missed a full month or more from illness and mom taking me back and forth to doctors and hospitals. these things combined, caused a high level of discouragement that made it very hard to work...I'm sitting on 5 incompletes now.... Gah.... and now, she, the 7-3 nurse QUIT in protest over this agency change stuff.
Now we are in serious crisis mode with only one nurse left. I won't be able to go school, it's all blown up. Just when I thought it couldn't get worse, it's all turned to crap.
I am so sorry. All of this is so unfair. I wish I didn't think half your problem is simply living in Alabama - but I do. Not that what you are experiencing doesn't happen elsewhere - but it just doesn't happen as much or to the degree that it seems to in the south.
The 7-3 nurse is the evil one isn't it? So what you left is the one you really wish you didn't have ( if that were a choice.)
The apartment you want to live in is on campus? So then transportation to school wouldn't be an issue - just (not that this is such a simple just) keeping your ventilator tube attached?