Spinal Cord Injury chose me...
Plegics for dummies...
Whether you are Quadriplegic, Tetraplegic or Paraplegic it is not easy. It may look like we are just sitting here in our chairs but you have to be very smart and very creative to figure out after so many years a new way to do everything you used to do or used to like to do.
Caregivers:
Caregivers are one of the biggest challenges to find and keep. Just because somebody wants to or thinks it looks like a good job doesn't mean that they can do it. I have had some really great experiences and I have also had some really scary experiences. You basically interview somebody a couple of times and then invite them into your house and pretty much put your life in their hands hoping that they are as experience and honest and careful as they claim to be in their interviews. A lot of them have references but it's just their friends and family pretending to be references. The alternative to hiring somebody privately is going through an agency. There is no interviewing which means somebody else is picking somebody for you to trust and let into your home, although if you do not like them they will replace them.
Sue:
My very first caregiver was an older lady who lived on a farm with her husband and they raised quarter horses for racing. She would come in the morning and get me dressed and up in my chair and hang out with me until somebody came home. She was a great lady. She worked in a convalescent home until she got bit by a tick and got Lyme's disease and had to quit. I wasn't supposed to smoke but she would sneak cigarettes for me during the day and I really loved hanging out with her.
My second caregiver was a 19 year old girl whose name I cannot remember. She answered the ad because she needed a place to say and it was free room and board, she had no experience. She spent most of her time in her room with the music really loud so if I needed anything there wasn't any way to get a hold of her anyway. After a couple of months we found out that she was pregnant, was sneaking her boyfriend in the window at night, got thrown out of her parents and grandparents house and was robbing us blind. When we finally asked her to leave she took most of her stuff out in big black garbage bags and I noticed that she had twice as many going out then she did coming in but I was just glad that she was leaving.
LuAnn:
My next caregiver was a teacher's aide for opportunity kids, kids who had gotten thrown out of a regular school. She worked half a day there and then came home and relieved Sue so she could go home. LuAnn was more my age and we got along really well. She answered our ad because she was separating from her husband and needed a place to stay; she also had no personal care experience. After a couple of month she started to act really strange. One day she would be in a really good mood and the next day she would fly around the house yelling at herself. She was a little bit more attentive but sometimes it was hard to wake her up at night when I needed to be cathed. I did notice that she liked to drink but I didn't know about the drugs until after I moved away. Somebody sent me an article when I went to live with my parents that said she was arrested for possession and dealing methamphetamine.
Karen:
Karen was from an agency and she started working for me after I moved in with my parents. After a while my Dads alcohol started missing and I could smell it on her breath. She told me she was five years sober but apparently she fell off of the wagon. It really scared me because she had to put me in a Hoyer left and bring me in the bathroom on the carpet which wasn't very steady and even. The scarier part was that after she left working for me she went to work at a hospital where she bathed newborn babies. I remember one day her and her husband and her two-year-old grandson came to visit after hours and she passed out in my bedroom. One minute she was sitting there talking to me and the next minute I looked over and she was slumped over and her glasses had fell to the ground. I had a button on the side of my bed in case I needed to call my parents in the middle of the night, I pushed the button and my dad came in and saw her and told her husband and he made an excuse about her being very tired and they went home. They came over one time on Fourth of July and she was obviously very intoxicated. She was trying to get me up into my chair and my aunt was very upset because she was trying to help me in her condition. I called the agency and asked them to please send somebody else.
Mona:
Mona was also from an agency but I hired her for organizing and cooking. She hated to be left out when my caregivers were there and needed a lot of attention and praise for everything she did. I had a boyfriend at the time she worked for me and she did not like him very much, everyone said she was jealous. Whenever I asked her to do something like get him a cup of coffee she would tell me to wait until the caregiver got there and she would get only me a cup. I asked her again to get him a cup of coffee and she said no so I told her that she had to leave. She was supposed to be my hands and legs since I could not use mine.
One of my biggest problems with having a caregiver is that I want them to feel at home and comfortable. I almost always end up getting taken advantage of. People mistake kindness for weakness.
Lulu:
Lulu started working for me while I was in the Independent living Center and she dropped me on the floor her very first night, I think she cried harder than I did. She said she thought that would be her first and last day but she's still with me after about eight years. Lulu drives me around on errands, doctor's appointment and does my personal care and put me to bed in the evening. Every caregiver that I have had thinks that she has an easy job and try to talk me into giving her job to them, she just makes it look easy and fun.
Brenda:
Brenda did not like to do personal care; she was in the wrong business. She basically took the job thinking that it was only going to be a companion and that she wouldn't actually going to have to work and when she found out she was going to have to work she did not like it a bit. When I moved into my own place by myself she did a lot of decorating and hanging pictures, stuff like that. She loved to do that and almost got upset when I asked her to do some personal care. She was also very jealous of Lulu's job and wanted it. She thought that since I lived in a nice place I had a lot of money and should always buy her something. When we were going out to lunch she would ask us to get her something and not give us any money, she told Lulu that I could afford it. When my boyfriend was over we would sleep on the floor on an aero mattress because it was bigger than my bed. One day she forgot to put a bucket underneath my water, I keep a Camelback by my bed in case I get thirsty at night; it leaked underneath the bed and ruined my hardwood floor. When she got there in the morning she denied it even though she was the only one there the night before. When I called the agency they said that they would replace it but she also denied to them that it was her fault. I asked the agency to please not send her back to my house.
Jennifer:
Jennifer also took the job hoping that it would be a companion job so she could just sit there and practice her sign language; she also got upset when I asked her to do personal care. Her nails were very long and she had studs on them and I remember they would always pull my hair when she washed it. I asked her one-time to go out to the porch and grab my laundry and put it away, I sent my laundry out to be cleaned. She told me there was nothing out there but when my friend came by about two minutes later she brought it in and put it in the laundry room and told me it was their, I told her to leave it there and Jennifer would put it away, Jennifer did not move and didn't put it away anyway. I again called the agency and asked them to send somebody else... is there something wrong with me?
Mimi:
She was also from an agency. I had tendon transfer surgery done on both of my arms so she was there 12 hours a day until after the casts came off. She was a very good worker and a great person and we got along really well. At that time Lulu was not with me so Mimi had to do everything, she always kept herself busy and never complained about doing anything.
Josephine:
She was very pleasant and very accommodating AT FIRST. I wanted an attendant who could come in at 7 a.m. she was happy to do it and everything was great. After a couple of weeks it started being 8 a.m., 9 a.m., 10 a.m.... she said that she had to drop her daughter off to school so what could I say? Everybody makes it sound so easy to just say no and take charge but they don't have to be alone and vulnerable when people get angry. I guess one of my biggest fears is that I will make one of these ladies angry and they will try to hurt me and there will be nobody here to help me. After awhile I was really scared to be left alone with her and wouldn't even take a bath. She started asking somebody else that worked for me why I should have so much and she should have so little. That's when I decided I needed to find somebody else.
Gloria:
She was very sweet young lady and we got along really well. I have also been told that I am too nice to the people that come in to help me because they all seem to always end up taking advantage of me. She wanted Lulu's job because it looked like it was a lot more fun than hers. Because Lulu drives me around running errands, to the park, to the movies, and anywhere else I need to go. She also does everything that the morning attendant does. Gloria did not like to pick up after the dog or do the dishes and got out of it whenever she could. I needed to find someone who could accommodate all of my needs.
My own place:
When I was looking for my own place was very exciting. I had never lived by myself and now that I am in a wheelchair is going to be a lot more challenging. When I actually found my place and started seeing it come together asserted to get really scared. Am I going to be able to live by myself? What if something happens and they need help urgently? What if somebody breaks into my house, I would be stuck in bed... a sitting duck. I pictured myself sitting in my bed and watching somebody carry everything out of my house and not being able to do anything.
Luckily the guy that is doing the adaptations on my house is a friend of the families and extremely creative and knowledgeable about just about everything. He turned my new place into an accessible heaven.
I have to admit that although I really enjoyed having my own place and being by myself that I did get scared, the nights were worse than the days, I heard every little noise at night and didn't sleep much for the first couple of month but then it got easier and easier. Whenever anybody opens a door or window there is a beep and that helped a little but I kept listening for the beep. After about a year when I got my Canine Companion everything went great. She not only gave me the confidence to go out and do things but I felt very safe and secure in my home.
Before I got my Canine Companion I would leave the house with several errands to do. While I was doing the first one I convinced myself to come back home and finish the errands the next day... tomorrow never comes. Now I look forward to getting out of the house and often think of other things to do to stay out in this beautiful weather. I always loved to go to the park but I never really did, now that I have Brodie we go to the park at least every other day. We usually get something to eat and then let Brodie runaround for a little while.
The Independent living Center:
I went from my ex-boyfriend and around-the-clock care givers taking care of me to my parent's place where my mother was there all the time to take care of me. I hardly ever left the house and I didn't know how to schedule my own rides, appointment or even any kind of recreational outings. After my father passed away my aunt decided it's time for me to go into an Independent Living Center and learn how to take care of myself, it was definitely a good idea because I learned a lot.
The timing wasn't really good because they were in the process of moving their offices and I really didn't get very much direction or attention, that was both good and bad. The first rule they tell you is that being there is the same as having a job. You cannot have attendants, friends or family there between 9 a.m. and 5 p.m.. The first problem that I had was that there was nobody there to empty my leg bag. Also there was nobody there to help me get something to eat; I lost a lot of weight while I was there. There was a lady that live there and was supposed to kind of watch over all everything but it was really difficult to get her out of her bedroom and off of her computer unless it was the mandatory one hour she was supposed to do something with us, go to the store, cook a meal or play a game or if she decided to take us on an outing.
There was a couple of OT's that came by almost every day but they were not supposed to empty my leg bag or anything else personal life that. They did help me try to figure out a way that I could get my own food and eat it, how to go grocery shopping and ask for help, they got me the proper telephone so I could make calls and schedule my own rides, find and schedule attendants to come in and basically take care of any problems that come up by myself. I really learned a lot there a lot of it was the hard way.
After I was there by myself for a while a couple of other people came into the home, there was room for three clients to live there. They also had support meetings about once a week and a bunch of people came to the house to attend those.
Canine Companion:
I searched for a long time trying to find a Canine Companion. The places around here had a five or six year waiting list and most of them weren't even taking names anymore. I searched over the Internet, asked people that I saw that had Canine Companions, checked out the Abilities Expo, everything I could think of but I didn't have any luck. I decided to get a puppy and train it myself or get a trainer to help me. I wanted to find a breed that was smart so I decided on an Australian Shepherd. I found a breeder over the Internet that was a couple hours away and e-mailed her to see if she had any puppies left and she had one. She told me that her husband is a paraplegic and he trained one of their puppies to be a canine companion and it worked out really great for him. It didn't work out too well for me. I live in a mobile home park and I don't have much of a yard and Australian Shepherds need a lot of room to run and a lot to keep them busy. At the time there was a guy saying here and he was supposed to help me potty train her but he wasn't helping me and all. I told him he could stay here for two months and he wanted to stay longer. He finally told me that if I let him stay he will help retrain the dog and when I said no he quit helping me. She started tearing up everything in my house and whenever she went out into the yard she would jump over my fence and runaway. I tried to give her away to a couple of people but they have the same problems, she needed a place where she could run a lot. I finally gave her to my sister-in-law's brother who has a huge yard and another dog for her to play with and she is very happy.
I found a guy over the Internet that trains dogs and I e-mailed him. I contacted him about taking Keisha, the Australian Shepherd, and training her for me and when I e-mailed him back he said that he had several dogs already trained and he came to interview me and see what my needs are. He called me back a couple of weeks later and said that he had the perfect dog for me. She's a Golden Lab and Pit Bull and she would be tall enough to reach my lap without any problems. He brought her down and introduced us and stayed here for the weekend to get her used to me and show me what she could do for me. Her name is Brodie and she worked out perfectly for me. About eight months after I got her she got a sore on the end of her tail and no matter what we tried we could not get her to leave it alone. We tried everything we could think of and everything the Vet and everybody else we talked to could think of to make her leave it alone but nothing worked. It got really bad and whenever she would wake her tail it would hit the wall and blood would start shooting all over the wall and the floors. After about the fourth visit to the Vet he said there was nothing else we could do and we would have to amputate it. That was really hard for both of us. She had to walk around for two weeks with a funnel caller around her neck, bumping into everything and I didn't know it either one of us was going to make it. She is doing great now and doesn't seem to be affected by it at all.
Settlement Company:
After my accident it took me about six years to get my settlement. One of the nurses that took care of me in the hospital introduced us to an attorney that could help us find out if we have a case against Caltrans or Mazda. He was a really nice guy and traveled from San Jose to Los Banos to talk to us about the case. Unfortunately, he was killed in a vehicle accident on his way to Las Vegas with his girlfriend and his child, a drunk driver crossed over and hit and killed him, his girlfriend and son were OK.
The attorney that I had at the time suggested that I'd get somebody to help me take care of my finances and needs. It started out really well and all I had to do was tell them about something that I heard about or saw online that looked like it would benefit me and they would do all the rest, get the information about it, find out where to get it and they would even get it for me.
We finally agreed on how to disburse my settlement. $400,000 was to be put in an account for me to buy a house in two years. The rest is sent to the monthly to take care of my personal-care, rent and anything else that I need. It worked out really great for a while. I saw something that I wanted or that would help me and I would tell them about it and they would pursue it.
It was exactly 2 years when I decided to try to find my own place. I found a realtor and went out looking for my own home. I searched for a long time and found the perfect place. When I came down to purchase it I told the settlement company about it and they told me I did not have enough money to pay for a house. I thought that was kind of strange and ended up looking at mobile homes. I looked around for awhile for the perfect location in the same mobile home park that my mom lives in. I finally found one I wanted in the perfect location and when I told the settlement company about it they tried to finance it at 10% for 30 years. At the time I didn't know enough to ask about the account that was set up in the beginning. When my aunt heard about it she stepped in and started asking questions, the account that we set up was gone and they really didn't have any explanations why except the lady that was taking care of the banking part of it was no longer with the company. After we had a meeting with them my aunt strongly suggested that I get rid of them and take care of everything by myself, it was very scary but I did it and I have learned a lot and I'm glad that I did.
Captive audience:
One of the most annoying things about being a plegic is that you can be a captive audience. Especially when you're stuck in bed for whatever reason. I remember before my injury whenever I was through talking to somebody I could get up and walk away but now I'm done talking to somebody when THEY decide I'm done which often times is a much longer conversation than I prefer.
Unwanted guest:
One of the guys from the park that helped me move came to my door one day and said that he had nowhere to go and asked if he could stay here for a while, I didn't know what to say and he knew that I have two extra rooms so I said he could stay here for two months. He really liked it here and told my attendants that he would like to live here permanently. Both of my brothers and their families did not want to stay here if I was living here with a man and not married, it doesn't set a good example for the kids. When I told him that and I told him he could not stay here longer than two months he got mad. He would walk around the house with a really short robe on which I thought was really bad manners considering there was always people around, relatives, attendants and neighbors. After two months was over he said he could not find anywhere to live and he didn't know where any homeless shelters were so I went online and found about 500 and printed it out for him. He was not grateful and he said he couldn't go there because they didn't allow cell phones. It was almost 3 months before he finally found another place to go and left. The entire time he was here I pretty much locked myself in my bedroom. Hopefully I learned a lesson and if somebody else that I don't want around asked me to stay here I will remember this and be strong enough to say no. I am too nice and people mistake kindness for weakness.
Pain:
I know for me there is a lot of constant pain, nerve pain. Most of the time is easy to deal with but like everyone else I do have my bad days where I just don't want to deal with it and it really bothers me. I know that everybody have days like this and thankfully they are few and far between still just as annoying. My mom once asked me what it feels like and this is what I told her... "You know when you have the flu and it feels like somebody is sticking needles all over your body?" That is what it feels like all the time.
If I keep myself busy and exercised a lot I can keep my mind off of it.
A lot of people deal with pain every day and I cannot compare my pain with anybody else, different kinds of pain are equally as annoying but everybody's pain is different.
Family:
Family plays a big part in coping with your injury and living life after an injury. My first relationship started when I was 18 years old and lasted until about a year and a half after my injury. Unfortunately, I took my relationship at that time more important than I did my family and I learned that I will never do that again. I have two brothers, 2 years older and 2 years younger, they both have three children who are really awesome. I put my relationship before my family because that is what the guy that I was with wanted and it actually was a really miserable life. I missed my family a lot but it did not realize that I was in a bad situation for a long time; I will never do that again. My family would do anything for me and I would do anything for my family.
Typical day for me and my luck with attendant:
Madonna, who works for me on Monday, Wednesday, Thursday, Friday, and Saturday split shift showed up on time today for work, today is Tuesday. After Madonna leaves because it's not her day to work Vickie, who is supposed to work today calls after Madonna leaves and says that she's going to be late. I had Lulu, my afternoon and attended, come in at 7 a.m. to help Vickie with the morning routine so I could have a bath, get dressed and up in my chair because I have an appointment at 10 a.m.... I started out with three attendants this morning and now I have none. It is already 7:30 a.m. and Lulu is not here, I told Vickie if she was going to be late she might as well stay home because I have Lulu coming in at 7 a.m. Confused, welcome to my life.
Sex:
One of the questions that I always get and I always thought was kind of strange is” can you still have sex"? or” can you still be intimate was somebody"? At first I really never knew how to answer this question because I thought it was very weird but I guess it's all a part of everybody's curiosity. Now I just tell them "absolutely". After an injury of course you have to do a lot of experimenting and you have to be very creative, it definitely takes a lot more communicating.
Generator:
Today was an interesting day. I have been training a new girl since Thursday but today was our first day alone and wouldn't you know the electricity went out. Luckily we were done using the ceiling lift but my bed started deflating and neither one of us really knew what to do. The contractor that helped me with my house suggested that I put a generator in the shed and there are orange outlets in the House that run off of the generator, the only problem is you have to know how to start a generator or know somebody that lives around you that knows how to. My mom came down and it was like the blind leading the blind but they fumbled around for a while and they decided there wasn't any gas. I have on my calendar every month to start the generator to make sure that it works but apparently looking at the reminder on your calendar is not enough, I think you have to actually start it... live and learn I guess. while they were outside fumbling with the generator of the electricity came back on so I said Brodie out to get them, they yelled at Brodie, send her back into the house, closed the door and continued trying to figure out how to start the generator.
Caregiving agencies:
I have had my share of experiences with caregiving agencies. They charge their clients $24 an hour and pay their caregivers $8 an hour, I just think that is so wrong? About two years ago when I moved by myself I wanted to use one of my contracted caregivers for personal employment. They told me it would cost me $4000 to buy out their contract. I recently got somebody to say here on weekends so I wanted to higher the girl I use during the week and pay her privately. When I call the agency to inquire about it they said they had to look up my file before they could answer me, why would you have to look up something that is company policy? She called me back and said it would be $7,500 to buy out her contract, is that ridiculous? I guess I'm just going to have to contact an attorney and find another way. It is really nice to have an agency because they can send somebody if your regular caregiver is sick or has an emergency but this agency has not done that for me lately. They can't really find anybody on the weekends so I have to rely on my mom, I do not like to have to do that but she is more than happy to help.
My very first outing after my injury:
One thing they really try to push after a spinal cord injury is getting out of the hospital and trying to get used to blending in with the outside world again, for me this was a really hard thing to do and I made every excuse I could think of to not go outside of the hospital. They take you out to a nearby restaurant usually to start out. I already felt like everybody was staring at me so the last thing I wanted to do was go to a public restaurant, have them strap a fork on my hand and let everybody watch me spill food all over myself. The second outing I went on went just as well. They talked me into going to a baseball game where the nurses and orderlies were playing, at the time I still had my halo on but I figure they knew what they were doing. It took a while to get everybody loaded into the van and I was last. It was a really scary feeling being raised up the lift but there was a couple of OT's there and my mom so I was ready to do it. They were very careful when driving me into the van to watch and make sure my wheels stayed on the ramp and I was loaded in smoothly. They forgot to watch my head in the top of the van. As they drove me forward my head, halo and all, smashed into the top of the van. Everybody froze in fear, a really nice view from where I was sitting. Everybody kept asking me if I was okay and all of the sudden being the center of attention I didn't know, I couldn't tell if I was feeling any pain. Everyone decided to go ahead to the game, I didn't want to hold everybody up. My neck hurts so bad I could not even concentrate on the game, I just wanted to get back to the hospital and into my bed. When I got back they took me in for x-rays and everything was OK. I was a little nervous to try anything else knew but I did get easier and easier and I even found myself having fun.
Abuse:
You don't have to be struck or have marks left on you to suffer abuse. Sometimes mental abuse can almost be as traumatic as physical. Somebody always telling you you're too fat, you could never do anything right... it kind of makes you expect to get ridiculed for everything that you do. I always wonder how people can stay in physically abusive relationships. I watch them on TV and even see it in real life and wonder "how can they put up with that"? I lived with it for many years but never realized it was abuse, I thought everybody got treated like that behind closed doors. It makes you feel like you need to stay where you are because you're not smart enough to make it on your own and nobody else would want you. it is just somebody making you feel guilty for wanting to do anything or going anywhere because they do not want to or cannot go along.
I remember one time I put on a long dress and some boots because my family was coming over for Thanksgiving, I was already unsure of my looks and not very comfortable in a dress when I walked into the living room and my ex said "how much would it take to get you to take that dress off"? I went back into my room, took the dress off and didn't wear one after that for a long time.
I think the reason that to this day I don't like talking on the telephone is because I was always told "you don't need to be on the telephone longer than 10 minutes" not only growing up but all through my adult life. I get really nervous having people around for long periods of time because I'm afraid that sooner or later they are also going to start believing that I'm stupid and cannot do anything right.
Being honest with your friends about your injury:
I was writing an e-mail to one of my really good friends that I have gotten really close to and it seemed like something that I would like to add to this. He was feeling like just because he had an injury he could not do as much as he did before for his family. I told him my experience and it's probably not for everybody.
I often feel/felt that there is so much more that I used to be able to do that I cannot do any more and in 10 years I have come to find out that I am the only one thinking that way, my family doesn't see it that way at all and that is how it should be. Obviously, you did not ask to get in such a severe accident and nobody is invincible and if you have good family and friends they try to make you feel that that is true but often it is within ourselves. Sometimes emotionally you can add more than you ever did physically, I know this is true for myself because emotionally is basically all I can give anymore. Because I have so many support chat rooms online and because both of my brothers ended up telling me that I have talked them a lot about dealing with life because of what I HAD to go through, a lot of people say that they couldn't have dealt with it but when it happens to you really don't have a choice? I know that your outlook and humor about everything is really always upbeat to me, every one of your e-mails makes me laugh as well as bring back memories.
When I was in the hospital a couple of things that I've really HATED hearing... "I know exactly how you feel" , mostly because this person broke their leg and was in a wheelchair for a month, "God never gives us more than we can handle and this happened to you for a reason". My mom has a plaque on her wall that says "I know God never gives you more than you can handle but I wish he didn't have such confidence in me".
Feeling sorry for myself:
I guess that everybody does it but when I see other people doing it and it is not very attractive but I also catch myself in the same category.
Although I live alone it seems like there is always somebody here. Somebody to do personal care, somebody to clean the house, somebody to cook, somebody to do maintenance or somebody who just stopped by to chat for a while. Sometimes I complain to wishing I could have more time to myself but I don't know what I would do without people always being around.
Sometimes when I have time to think about my situation I get really emotional and wonder why this had to happen to me? I have always tried to be a good person and I never intentionally hurt anybody so I don't think that it is because I deserve it. People always tell me there is a reason that this happened to me and it happened on purpose because I am supposed to do something; I hope I figure out what I'm supposed to do soon because I am getting old. When I start feeling sorry for myself I think about other people I know, able-bodied or not, will feel the same way most or all of the time. There are a lot of people who are a lot less fortunate than I am and sometimes I feel like I have no reason to feel sorry for myself but everybody has the right. Some people think that since I am in a wheelchair I have a lot more problems, heartache, pain or more of a struggle to get through life than anyone else, not true. Everybody has problems and I don't think anybody's are better or worse than everybody else's, just different and everyone handles situations differently.
I was talking to a friend of mine earlier that I have known online for several years who was saying that people never really come to visit him, when they come to the house it is almost always to visit his mother. He hardly ever gets up and never goes anywhere because he has no transportation. There is transportation but only for doctor's appointment in hospital emergency's. It made me stop and think how lucky I am to have so many people who care about me around and to be able to go out pretty much whenever I want.
I also think about the people I have talked to that have no family or no family that once to help them or have anything to do with them since or because of them becoming disabled. My family has always been very supportive and always there for me. They would do anything for me and I would do anything for them, a lot of people don't have that. At first I thought that the reason that my friends don't come around and don't talk to them as much as I did before is because of my situation and maybe that's partially true but not totally. Friends grow up, get married, get a job and have their own families to take care of. There are a few friends that I talked to or hear from every once in awhile and it's really nice.
Big online scam:
In the past several months I have been getting instant messages from really nice guys who can not wait to marry me and who claim they have fallen in love with me after either one short conversation or after leaving me several messages. Each one of them had to leave to go on a business trip but cannot wait to get back so we can meet and get married. The next message I get from them they want the same thing but all have a different reason. One of them went back to Africa to bury his father and needs to close down his father's business and pay off all of the employees but cannot cast a cashier's check there. He wants to send his cashier's check to me so I can cash it and sent him the money. Another one went back to Africa because his father was very sick and need an operation but cannot cash his cashier's check so he also needs me to cash it for him and sent him the money so his father can have the operation and will not die. Another one went to Africa to open an orphanage but again cannot cash his cashier's check and wants to send it to me to cash and send the money to him to help the homeless children. All of these guys constantly reminding me how much they love me and cannot wait to get back to the states so that we can meet and get married and live happily ever after. They usually have a picture on their profile although I seriously doubt it is really them. In the messages they send you really long and lovely poems or long messages telling me how beautiful I am and how much they would like to get to know me. I knew right away it was some sort of scam but I could not believe how fast these guys work and how many of them there are out there.
It is a shame that some people think people with a disability are so desperate to find somebody to love them and find somebody to love that they actually fall for this but I really hope that that is not the case. If you take the time to think about it is not possible for somebody to fall in love with you that quickly and that completely. I can't believe that there are people out there that can take advantage of people, especially somebody who is so vulnerable. I hope that there are really not people out there that believe this. No matter how much you want to be loved please take it slow, if it is meant to be and if it is really love build it up slowly and take your time to make sure you're getting to know the right person. You know what they say... a something seems too good to be true then it probably is.
Traveling:
Traveling has always been very scary for me, especially after my injury. I have been invited to visit family and friends but if they were too far a way it always made me really nervous and sometimes I even thought of all kinds of excuses not to go... I need to sleep in my own bed, I need my personal care attendants, I need my ceiling left or my accessible van. Finally, after about ten years of being too scared to go but feeling really bad because I didn't go, I decided to just do it.
The first trip we planned was to go to Arizona to visit my Grandpa, my Aunt Bobby and by two cousins, who I have not seen for many years, Steve and Mike. The trip turned out to be really great, I love to watch out the window while traveling and whenever we got hungry or thirsty we just stopped. I brought my portable ramp with me so I could get into their house and we stayed an accessible motel. We stayed there for a couple of days and had a really good time. On the way back we decided to stop at Disneyland for a couple of days. It was Christmas, 50 year anniversary and New Year's Eve so it was crowded but it was also wonderful. The motel that we had booked said that it was accessible but really wasn't. I had a hard time getting into the room, my portable ramp was too wide for the doorway, the lip on the doorway was too tall and we found a thinner piece of wood for the doorway but there was a flower bed in the way. I could not fit to the bathroom door so showers were out, it was bed Bath's and washing my hair in the sink. The room was very small but we were only there to sleep. We really had a great time at Disneyland and watch the fireworks shooting off over the water on New Year's Eve.
My next trip was to Georgia to visit my brother and his family. That was a four and a half hour plane ride and I was really nervous and a little scared about that. I tried not to think about it until the day we were leaving and that helped a little bit. The flight there and back turned out to be really great. When we were waiting to board the plane the pilot came up, introduced himself, told me how the flight would be and told me what the weather would be like once we got to Georgia. I also heard after the flight that the pilot had told the airline attendants that this was my first flight since my injury and they made sure I was comfortable and had everything that I needed or wanted. I think what I was nervous about most was in order to get into and out of the plane you had to transfer twice, once into and isle chair and then into the seat on the plane. They had two guys just grabbed me and transfer me like it was nothing and I was on and off the plane before I knew it.
I called Wheelchair Getaways, a company that I have used here in California several times, and they had a company in Atlanta Georgia. I also asked them if they could recommend a care giving agency and a place to rent hospital equipment and they gave me a recommendation for both. The people that they sent out from the care giving agency were awesome , my mom did not have to help and I did not have to instruct them on anything including the bowel program. They were there for three hours in the morning and three hours in the evening and got everything done with time to spare.
Traveling has been so wonderful and my only regret is that I didn't do it a long time ago but I plan on doing it a lot more. My aunt and uncle go camping a lot and it always sounds like so much fun. My uncle has a way of attracting every camper within a ten mile radius and they all get together for a big barbecue and talk all day and all night. I'm trying to figure out a way that I can go camping with them and I think that I have figured it out. I can take a foam mattress and lay it on the floor of my van and use my portable lift to put me into bed.
I'm so excited and I cannot wait until my next trip.
Getting up and getting out:
I have been trying to figure out why I have such a hard time doing things by myself and I think that since my nieces and nephews have been here I figured it out. Most of my life I have had somebody tell me what to do and when to do it. My parents for eighteen years and in a controlling relationship for the next eighteen. I guess everything gets to be routine between life at home and work. Now I have a lot of spare time and I sit here it night and think of things that I would like to do for the week but most of them I never get to. When I found out that Deziree, David and Kelley were going to be sure for a week a planned things to do in since they were here actually did them and it felt great. When I need to start doing is planning what I want to do for the week and making myself do it. Simple things like going to the park, going to the movies and IMAX , checking out museums. Last week was very busy, I was up every day by 10:00 a.m. and usually didn't get to bed until about 6:00 or 7:00 p.m. and it not only felt great but I was very tired and felt good but I didn't have any pressure sores.
Juicing:
My newest obsession is juicing. I always like V8 juice but it has so much salt and preservatives in it it just makes me swell up. My neighbor bought a juicer and came over to tell me how wonderful it was and went out and got one for me and now I use it at least once a day. I go to Costco and by the fruit and vegetables already cut up and we just dump it in there every morning and sometimes that night. I have noticed that I have a lot more energy, no pressure sores at all whereas before I seem to always have skin breakdowns. I really recommend it to anybody who doesn't really eat as many fruits and vegetables as they should. The only problem I have had is that you have to juice everything right before you drink it because you cannot keep it for more than five hours unless you freeze it, I haven't tried freezing it yet.
Vulnerability after spinal cord injury:
I was always painfully shy and after my injury it got even worse. After my injury my ex-boyfriend didn't want me to be seen in public for whatever his reason to me it meant he was embarrassed of me. After I moved in with my parents and then eventually got my own place and with the help of my service animal I really came out of my shell and loved going out until one day I was taken advantage of by somebody I had known for a couple of years.
A lot had happened so I was a lot more vulnerable than usual. My grandpa, his brother and my aunt had all passed away within a couple weeks of each other. My mom, who lives right around the corner for me, was on a trip with my grandpa, who lived with her, when he passed away. I have care givers that come in the morning and in the afternoon. As my morning caregiver were leaving the gardener, who I have known for three years told my caregiver that he needed to ask me a question so she let him into the house and she left. He came in and asked me a question about my potato tree and told me how sorry he was about the loss of my family members. As he left I assume that he was going to give me a kiss on the forehead or on the cheek when he reached over and kissed me on my mouth. I was both shocked and very scared that this man I have known for so long would do this to me. I was in bed instead of my chair so there was really no way to get away from him so I just waited until it was over and called my caregiver and told her she needed to come back. When my caregiver came back she went and got my neighbor who eventually talked me into calling the police and making a report. I was afraid to go any further than that because I knew the guy and his five brothers were up and down on drugs and alcohol and in and out of prison their whole lives and I didn't want them to hurt me or my mom.
After some counseling and being put on antidepressants I am back to my old self but I want to make sure that this doesn't happen to anyone else. You do have to trust some people but you also have to be very careful.
Devotees:
I have met a lot of devotees online and everyone's question is... are they good people or are they not. In my observation there seems to be both good and bad devotees. Some like to date women/man who need help, they love to be helpful and take care of people and there are people out there who like to date men/women who are defenseless, can not protect themselves and who they think they can do anything to because they think they are desperate for any kind of attention.\
Methamphetamine:
When I was younger I never tried any kind of drugs, maybe a puff of my friends marijuana joint, which made me really sick and paranoid. When I was 18 and met my ex he introduced me to cocaine which I really liked. We didn't do it very often, maybe once every six months and that's probably a good thing. I don't remember the first time I tried methamphetamines, I think it was when I was working for Alen cleaning vacant apartments. He would give me a line in the morning before I started working and sometimes show up and give me a little boost during the day. I really liked that also. It was less expensive and I didn't have to do it as often as you did cocaine, a little bit and you would not only be up for days but full of energy. After I quit working for Alen I didn't do it for a long time but I eventually found somebody at Xicor where I worked several years later that sold it so I was pretty much a fateful customer on Friday afternoon. My ex worked the weekend shift so I was up all weekend and very productive. My house was immaculate, my laundry was washed and ironed, I made valenses and recovered all of my furniture.
Of course after my injury I wasn't able to get it anymore until one of the ladies that worked for me offered me a line and of course I accepted. After my injury I really didn't have very much motivation to get up in my chair every day. I would much rather sit in my bed and lose myself in the computer and the methamphetamines made me want to get up and even go outside and visit with the neighbors and cruise around. After a while I figured out that she really did it a lot. When she didn't have it she would frantically call the boyfriend that she had at the time and really get upset and freak out when she couldn't find him. A couple of times she started freaking out really bad and her husband, whom she was separated from, came to get her and took her to the hospital for a shot to calm her down.
Smoking:
Years ago I quit smoking. Not because I wanted to but because I felt humiliated in front of my doctor and my aunt. My aunt took me to see my doctor and after we went into the office and she closed the door she turned around and said "which one of you smokes?" I told her that I did and she said "we are going to need to discuss that" we never did end up talking about it but that was the moment that I quit smoking. I always thought it was kind of stupid anyways because I had to have somebody put an ashtray on my chest, put a cigarette in my mouth, light it for me and when I was done put it out for me and take away the ashtray. I burned my neck a couple of times and it's really hard to breathe with a cigarette stuck in your mouth especially when your lung capacity is only 50% to begin with. I quit smoking a couple of times. The first time was because my boyfriend that I had at the time was ready to quit so I was forced to quit also. I didn't quit for a while but then I would just sneak a cigarette when he wasn't around. I remember his good friend used to leave me a cigarette or two inside the roll of toilet paper in the spare bathroom before he went home. When I worked at Xicor I took the company truck every morning and evening to pick up and drop off the mail at the post office and I would smoke as I was driving the company truck.
Drinking:
I wish I could say that I started drinking because of my injury but that is just not true. I was headed towards having a drinking problem before my injury. Everybody tries to find an excuse why somebody drinks but sometimes there is just no excuse, it just happens. My family asks me what particular event started it and I just can't think of an answer. I don't know if I'm really an alcoholic because it's not every day. I was watching a show on college students about binge drink and I think that describes me better. I have wine all over my house hanging on wine racks that I never touch or have any desire to. My weakness is flavored vodka and if I have it in the house I cannot go to sleep until it's gone or I pass out. I wish I could be one of those people who only has one or two drinks before bed to help them sleep but I can't, I keep thinking that I'm going to try to be but I just end up drinking too much. when I drink I usually wake up around 1 or 2 a.m. and I feel awful, I have a really bad headache that of course since I cannot get up and take some aspirin I just have to lay there and suffer until my attendant comes in at 7:30 a.m. I also have a really bad stomach ache but I'm not sure if that's real or phantom. I've always been asked if I can still hunger for an upset stomach and even after 12 years I'm still not sure, maybe the stomach ache after drinking is guilt? At that time I swear that I'm never going to do it again and I don't for a couple of days, weeks, months... but somehow I always seem to want to get another bottle to prove to myself I can be a social or under control drinker. Sometimes when I wake up I can't remember some or any of what happened the day before. It's really scary to know that you can have full conversations and do tasks like go shopping, go to the park or to the mall and not remember it at all. It's also very embarrassing. One way I found to handle the embarrassment is to be mad at anybody that might have seen me or to just pretend it didn't happen that often but I know I'm only fooling myself. I even find myself apologizing the next day to whomever I might have seen and usually they just act like it's no big deal or usually I hide inside my house or just stay in bed. A lot of people say that before you realize you have a problem you have to hit rock bottom but I don't think that that is true. When ever I have been drinking for a couple of days or when I think it has gone on long enough I just quit for a while and maybe that is more confusing because although it is extreme I am able to stop whenever I want. I somehow think that I can have a couple of drinks and hide it from everybody but I know deep down that I cannot and everybody knows but just doesn't say anything, I'm not even fooling myself anymore. In order to quit bad or destructive behavior you have to have consequences, not private consequences but a public ones. You can't quit drinking because you know it's going to kill you or because you know you're going to wake up sick every morning because as much as you may want to really take care of your body that just doesn't work. I also don't believe that "hitting rock bottom is the only way you're going to stop" and I don't believe that "every recovery has to have a relapse". I quit simply because if I did not my aunt would not help me anymore and my mom would tell my aunt if I did not quit, for me that is a huge consequence. I always thought it would have to be when I was ready but it seems like maybe I care more about what other people think then what I think.
I used to know what I was going to do from day-to-day and didn't really have very much time for anything else. Get up, take a shower, go to work, come home, eat dinner and go to bed. Saturday and Sunday was basically clean the house, do the laundry and take the dog for a walk. Now it seems like I don't really know what to do with myself most of the time. I try to make plans every day to do something that there really isn't anything that I have to do or anywhere that I have to be. I guess there's good and bad to both lives.
For me one of the hardest issues after my injury is time. Before my injury I lived 150 miles from my job. By the time I commuted to work, worked, commuted home and did the laundry, the dishes and clean the house and the yard I really wasn't much time left to do much of anything else but I did not mind at all. Since my injury it seems that I have nothing but time. A lot of time to sit around and think about what I used to be able to do that I can do now. Do my own laundry, clean my house, get dressed and ready to go within 20 minutes, now takes about three hours, drive, walk... When you have a problem or something bothering you it's nice to get up and stay busy and not have to think about it, I can no longer do that. it is especially hard when there is a problem or you're worried about something. Most of the time since I'm not very active during the day, even when I do get up and get out, I don't sleep very good at night. I used to really panicked me but now I just try to watch TV, play cards or chat on the computer.
Pain:
Another thing that I had to deal with after my injury was pain. Because the nerves in my spinal cord were damaged it is inevitable. It's not a constant pain that you can learn to ignore its like a pulsating pain. I describe it best as the pain that you feel when you have the flu, like a bunch of pins poking your skin. Before my injury I was starting to feel a little bit of pain in my hips when it got cold because I broke my pelvis in an accident in 1980, when I was 18. the pain I feel now is mostly when the weather cools down but it's not really as predictable. You feel the pain really strongly for about 10 seconds and then he goes away for about 10 seconds and so on so it's really hard to ignore. Usually when you have a constant pain you can just learn to ignore it. When I feel the pain apparently it is not easy to hide because the people that are close to me can tell, I guess it makes me grimace. Most of the pain is on the inside of my left arm.
Auto accident in 1980:
At the end of my senior year in 1980 I was in a jeep rollover accident on Highway 9, the first turn coming out of Santa Cruz. My two friends that I grew up with, Jim and Ralph, and my cousin Terrie decided to go to the beach one evening and on the way back my cousin was in the backseat with Jim and Ralph was a little jealous, they both had a crush on her. Apparently Ralph saw them in the rearview mirror and got upset and was driving a little too fast when I went up on the embankment and the jeep rolled over. I was in the passenger seat and a seatbelt did not work so I was thrown out of the vehicle and then it rolled over me. I don't remember it happening but I remember waking up right after it happened in my left arm was above my head and I could not move it. I remember seeing the front tire right next to my hip and think I cannot move, seem to be really bad. I spent a week in Santa Cruz Hospital and then a month in Kaiser Santa Clara. I broke my left arm in three places, my arm was in traction the whole time. I had internal injuries, ruptured bladder and ruptured ovaries, a broken pelvis, which was also in traction and a couple of gashes on my head. Luckily everybody else had only minor injuries. After I got out of the hospital I was on crutches for a while then went to West Valley College to try and get the rest of the units that I needed to to graduate high school. After commuting with my brother for a couple of months I was too afraid of driving up and down the hill anymore so I moved to Stockton to live with my Aunt Marlene and my cousin Terrie. We lived on Bear Creek Road in the Santa Cruz Mountains. It was very beautiful up there but it was 5 miles of a winding Road, each way.
Pressure sores:
The pressure sore is never really just a pressure sore. There's a lot that happens besides a hole in your skin. For me it's very depressing and very frustrating because it always seems like as soon as one heals you get one or two more. The most comfortable position for me is to sit up on my butt in bed, for the most part this is usually okay. Usually the pressure sores start because I get a bladder infection and leak. The leaking causes blisters that sometimes get better if I lay on my side for a couple of days. Sometimes because the only way I can lay on my side and stay is to strap my ankle to the side of the bed so I don't have a spasm and roll over. Most of the time this works out really well but sometimes I get blisters on my ankle from the straps and sometimes blisters on the bottom of my other ankle from laying on the bed and friction. He gets to the point where it seems like I'm running out of sides to lay on and I just don't know what to do. I usually decide to get rid of the worst ones first and then try to get rid of all of them. It usually eventually happens but trying to figure out what to do is very frustrating. I have read a lot online and asked other chair users and although everybody has great suggestions it just takes time. Having to stay in bed for so long is also very frustrating. I get really moody and I feel sorry for Brodie, my service animal. Luckily she has a treadmill so I can still make sure that she gets the exercise she needs. It sure is great to get out again when I'm finally healed and they usually get so excited I don't know what to do first.
Attitude:
One thing I was always proud of is that people are always telling me that I have a really good attitude for somebody who has had a tragic accident. I remember in the hospital I didn't have too many visitors, I found out later that it was because the boyfriend I had at the time would not let anybody in to see me. I remember the parents, wives and husbands of the other patients used to come around and talk to me and it made me feel so great. I always thought that if you are always in a bad mood why would anybody want to come and see me or spend time with me and I was always very happy to see anybody. Although I don't have a very social life I do love to be around people. I have a feeling that when I moved to Santa Cruz that will all change because of the fact that my aunt and uncle are so social and I'm really excited about that.
Meeting celebrities:
Growing up in the Santa Cruz Mountains our neighbors were really good friends with the Doobie Brothers. My brother David and I went to one of their concerts last year at the Saratoga Mountain winery and he told me that he remembers sitting on the roof and listening to their music when there was a party next-door. I remember once in awhile they used to borrow my horses so they can all go riding. Our neighbors have a horse that was named Doobie, it was a beautiful brown and white Appaloosa. I remember hearing that they went camping and tied it to a tree too close to the cliff and the horse fell off and hung itself.
I remember one time, actually a couple of times, when I was at Valley Medical Center I met Robert Conrad. I didn't really know who he was so I asked my OT because everybody was making such a big deal. I remember feeling so bad for him because even though his arm was in a sling everybody was still asking him for his autograph. I got to meet with him and talk to him a little bit and I saw him one time after the support group. I was on my way home and I heard somebody say "hello Tammie" I backed up and looked into the room and there he was. He said that he remembered my name because it was the same as his daughter. I saw him one other time and she was always so nice to everybody even though he had been in a car accident and I'm sure would have liked to be left alone.
I also one time met Ty Herndon. A group of friends and I went to a local club to see him perform. I called the club ahead of time to make sure that they could accommodate my power wheelchair and they said yes. When I got there I started to lead us down by where the stage was when suddenly we ran into some stairs, the guy looked up the stairs and turned around and looked at me a little embarrassed. We ended up sitting on the side of the stage where we could see pretty much nothing and the songs were muffled, it wasn't a real good experience.
I saw an ad where he was going to be playing at another local club so I e-mailed the club and asked them if they were wheelchair accessible and explained my last attempt to see Ty Herndon and Viacom is that they could accommodate me. The lady called me back and told me that she had spoken to the manager, her husband, and he not only gave me free tickets but they met me at the door early to escort me to a table right up in front, it made me feel so special. They kept coming by during the performance to ask me if I needed anything, I have never met a nicer couple. After the concert I went up to thank them and they told me that I could not leave yet because they were going to introduce me to Ty Herndon, I was so excited. As it turned out everybody else that wanted to meet him had to go into a secure area so that he would not get mauled by the crowd. Unfortunately the secure area was down quite a few stairs. I remember the manager saying that he was going to make sure I got to meet him and he did. He brought me over to a corner of the club and as a bunch of bodyguards and people that worked there cornered me off Ty Herndon came out and gave me a hug. At first I didn't realize that it was him but then when I realize it was an unbelievable feeling and she was so very sweet. I got to have a couple of pictures taken with him and the club manager but unfortunately only one of them came out, at least I have the one.
People Notice:
One of the things that a couple of people I played cribbage with said is that they noticed I have a lot more movement than they remember. I guess that since I am around me all the time I don't notice it but it made me feel really great because I thought that I wasn't going to get any more return. I have been exercising and using the tens units and I think that's helping a lot. My uncle has a friend who is a welder and is going to help me out when I move to turn my garage into a workout room with a stationary bicycle that I can use while in my chair, pullies on the wall... stuff like that. When I was in the Independent Living Center somebody had left a homemade eating utensils for somebody who had no grip in their fingers so the lady that ran the house said I could take it home. I looked all over in stores and online and could never find anything that works as well as this one so my uncle's friends made me a spoon and a fork and they work great, we are thinking about patenting them and selling them. I have had a lot of ideas that I wish I would have patented but I never did. One of them was snow chains for wheelchairs. I talked to a couple of people that live in the snow and they use bungee cords and say that it works okay but it could be better. I was going to get my brother David to make a prototype and go from there but we never did. There was another one that Sabina, my OT at Transitions, we're going to try to patent but I forgot what it was now.
I've noticed that some people seem to be really angry with me because I'm in a wheelchair. I don't know if it's because I remind them of what could happen or because maybe they are angry with themselves because they don't know how to act or what to say so I just smile and talk to them if they want or ignore them if that's what they want. I hear people say that if this happened to them they would not be able to go on but I always thought that also. I used to stare at people who were different but only because I was curious. I have always loved to watch people and try to figure out how they think and what they feel, to some people I represent their worst nightmare.
Xicor:
I love working on Xicor. Getting back in touch with all of these friends really brings back some memories. When I started working at Xicor I lived in Lodi. I think my family was trying to get me to move back into this area and the lady that had the position open was a friend of my aunt's. I interviewed with her over the phone once or twice, I can't remember, and I got the job. I commuted for a while, it took about two hours and the traffic was awful. After a while we move to Tracy which was only an hour but still the traffic was awful. I interviewed for the custodian position and I really liked the job. Mostly it was going around for building to building and emptying trash, sweeping, cleaning and restocking the cafeteria's and the bathrooms, I didn't have to do any scrubbing because the night crew did that. After a while my boss was asking me to relieve the receptionists for breaks and lunch and once in a while to replace them when they called in sick, of course I would have to go home and change into something nice but by then we were living in San Jose so it was only about 15 minutes away. She also encouraged me to learn the job of the mail coordinator so that I can also fill in for that job when the mail coordinator called in sick. While they were interviewing they asked me to fill in the mail coordinator's job and she was trying to encourage me to take the job full-time. Even though I knew all of the mail stops and the extensions I thought it was a lot of responsibility and it really scared me to try to take it on. It took them a really long time to hire somebody, I think they took a long time so that I would get used to doing it and want the job permanently. I finally accepted the job and ended up loving it. I would take the company truck to the post office at 8 a.m. and pickup the buckets of mail, there was usually anywhere from 3 to 20, bring them back to the mail room, sort the mail, load my cart and at 11 o'clock I deliver the mail. There was three buildings, two of them were two-story and I still relieved the receptionists for breaks and lunch, it actually made me feel really good that I could do all of this. I always got really good reviews and my boss never complained about my work so when anybody else would complain she would always stand up for me, that was a really big confidence booster. So pretty much after I memorized everything I would stand there and sort mail and people would come by and visit so I always had somebody to talk to. Then while I was walking through the buildings there was always certain people that I would stop and talk to. I was also in charge of weighing and posting the mail with postage, they had a big huge postage machine, and I would often collect people's personal mail and take that to the post office too. Eventually since I was running around people from different buildings would ask me to get their supplies from stores, stuff like paper, pens, notebooks... they had pretty much anything you could want there. Who could ask for a better job for a better boss? I pictured myself retiring from that job.
Everybody has stories that weren't funny at the time but they are thinking back. I would love to hear other people's stories and possibly add them to my homepage. If you have a funny, weird, or sad story please send it to me at chippertuechip@aol.com
click above to e-mail me