United Brachial Plexus Network, Inc.

HI TO ALL!!
HAS ANYONE HEARD FROM PUNCHY SUE LATELY??? HAVE LOOKED ON THE USUAL SITES AND THREADS, BUT NOTHING FOR QUITE A WHILE...I AM WORRIED---SUSAN, IF YOU'RE OUT THERE, HAVE A HAPPY THANKSGIVING, AND PLEASE LET US KNOW HOW YOU ARE--I TOLD DR. B HI FROM YOU--HE WAS TICKLED!!
>>> SUZIE

Suzie- I'm still here, but thank you for being concerned. Like everyone with BPI, you have good days and bad days. And unlike Joy from Florida, I do think this injury has limits to what I can do in the future. My careers have been chef work and massage therapy which I clearly can not do now. I support myself financially and I don't apply for unemployment because as a massage therapist, I had my own business license and was considered a private contractor. The accident was my fault so I don't have any settlement coming my way. So basically, I'm screwed because all my training is useless to me now. It's so overwhelming and really gets me down when I think of it. So no Joy, I don't think I'm my own limit to my future. Money makes the world go round.
I just needed to get that off my chest. I hope everyone has a happy holiday and enjoys the love and support of family and friends!
GOBBLE GOBBLE LOVE SUSAN

Hi Susan,
I know how difficult it is and exactly how you are feeling. I had my own ceramic tiling business which requires both hands to put tiles down on the floor or shower wall. I could kick myself sometimes because I did this to myself too. I was drunk!!!!! I slipped over rocks and slammed into a wall. Stupid. That one second has changed my life.... for now anyways. Don't be so hard on yourself. I know it is easier said then done because I am my worst critic. I don't know if god works in mysterious ways but things have gotten a lot better for me since this injury. I got way from a very abusive relationship out of Vancouver, which by the way, he is still there. I have stopped drinking, I have been fortunate "somehow" to land in a supervisory position on weekends working at a school for troubled teenage girls who have drug and alcohol problems and who have been abused emotionally and physically by boyfriends. I don't know why this all happened to me but it did and I have to deal with my pain, frustration of having only one hand to use and the constant ...what if's? What if I didn't drink that day, where would I be. I would porbably be dead because it was getting closer and closer to death for me with the carrying ons of my boyfriend and the physical abuse I took from him.
All I can say Susan, is try to make something positive out of this. Take care. Love, Karen

susan

Hi im from Florida and I was injured in Aug99. I own a motorcycle shop. I was hurt on a bike. I used to be a great mechanic and loved working on bikes and drag racing cars. It was my two biggest things I loved to do. My non bpi arm is weak and it has bad tremors when i try to do things requiring my fine motor skills. Drs have never been able to tell me what causes that. It is so frustrating my business is small and i work hard to keep it going. I have additional people on staff now to make up for the things i cant do anymore. With the slow economy and debt from being away during my injury. I struggle every day to keep it going. I really have no idea what else i would do if i sold or lost my business. It is a big strain on me as well, which generates more pain. I have spent so much effort trying to save my business that i have neglected doing xtra things for my own health. Like therapy, finding out why i still shake on my non bpi side, etc. I have some pain days that i just have to stay home or leave early.

Before my tbpi My ex and I lost a baby which lead to a separation. Which still affects me. My accident was right after the divorce so i never got a chance to emotionally deal with that. I got hit with a much bigger problem. First living through my accident ( in comma for 1 month). Then my goal was to get out of the hospital(3months) then it was to get out of my moms house and be able to live at the house I built before I was hurt. (5months). Then it was to save my business that I was away from for nearly 6 months. Now 4 years later Im still strugling with my shop and the pain but im still doing it. I guess what im trying to say is it doesnt happen overnight but it gets better. But never the same life as we lived before. Dr Teil told me we dont really ever not have the pain its more like we just learn how to deal with it. That didnt seem an acceptable answer back in 99 but now i know exactly what he meant.

I have always set goals in my life. I have been lucky to reach all that i had set before my world crumbled. The only goals ive met since are im still kicking. And I live independently in my house which is my santuary. And still operate my own buss.
My future goals are what keeps me alive.

I hope to get my shop financially back to where I was before and take it beyond. Someday I hope to meet someone and start a family again but I know that these things will come someday if I keep pushing forward. I do get discouraged alot though. I have thought of other ways out but....I gotta play my hand out. Its been a rough ride so far but there was a lot of highs once, athough i havent had many lately. theres a chance right???

John K

John, if you specialise in products for disabled bikers, you'll have more customers than you could shake a con-rod at. Get in touch with the UK's National Association for Bikers with a Disability www.nabd.org.uk and I'm sure that there'll be some advice available, and maybe even some customers from this side of the pond. Worth a try anyway.

Sue, I am sorry if I offended you. That most certainly was not my intent. However, I will stand by my comments. But, perhaps if I explain them a little better it will make more sense where I am coming from. Hopefully, I will not dig myself into a deeper hole!

When I had my accident in October of 1991 my son and I had just moved back in with my parents. I had a five year plan. Go to college full time and work part time. Get my degree in 4 years. Then have the 5th year to find a job to support my son and I and move out on our own again. When I had my accident EVERYTHING changed.

For two years all I did was go to doctor after doctor trying to find someone to help me. Eventually I found some doctors that at least had a clue. I then spent from 1993 until 1996 having surgery and going to therapy and trying to figure out how to get back to "normal". I guess I found out the BPI was now the norm for me and I had to learn to adjust. It can be very frustrating to see what could have been or what should have been slip through your fingers. But, it can be very rewarding to see where the new road will take you.

I was able to spend more time with my young son. I was his room mother through out elementary school. I had the time to be active in every single aspect of his life. Now sometimes it was laying in bed with a heating pad on my shoulder all proped up on pillows while I read him a book. But, it was still quality time.

I learned a great deal about my body. I learned that while I may not be doing things the way I use to, it can be interesting to learn new ways of doing things. Like washing my hair and having to prop my elbow up on the shower wall to massage the shampoo in. Or, filling a pot on the stove with water instead of filling it in the sink and moving it to the stove. Now don't get me wrong I still get pissed off when I can only put three curls in my hair before my arm goes dead and I have to rest it before I go on. Or I drop a plate or dish because I don't have the strength in the hand to hold on to it. Or what use to take 10 minutes now takes an hour. But, I can still get it done.

I find that even small accomplishments mean a great deal to me. More than they ever did before the accident. I don't take things for granted as I did before. I find that this injuries reminds me how grateful I should be. The accident I had very easily could have killed me. So on the days that are bad I always try and say a little thank you that I am alive to feel the pain.

When the positive thoughts and everything don't work.... I come here and read about the kids. They give me a great deal of courage and strength. The way they are able to respond to the world around them really does inspire me. Kathleen and Nancy and Judy that have been living with this since they were born are a HUGE inspiration to me.

As a chef you know that some recipes work and some don't. So change your recipe. Make it work for you. If it means going back to college to be retrained then go for it. Think of something you have always wanted to do and do it.

I was in college going to be an accountant. Then I got married and realized I liked the job of wife and mother far better than any other career I had in the past. I was fortunate because like you I was having a difficult time finding work that I could do. But, I must admit I was having fun trying different things.

I hope this makes some sense. I don't want to make you more upset with me. Unfortunately that is something I have a knack for as well!

Joy

P.S. You know the best thing about this injury... you don't have to wear pantyhose anymore!!!

Hi Joy

I missed seeing you around and your great insight. How is Adam doing in college? Glad to see you posting again. Thanks for the kind words.
I hope you stick around for awhile your kinds words had honesty has been a great help to many.

Kath

Joy- I apologize forlashing out at you but your comments did offend me. I stand by my comments also. By saying theat I am the only limit to my fututre sets up a scenario of blaming myself for not being able to physically do something athough mentally, that task is all I want to do. For example, say that your son really wants to go on a ride at an amusement park. All his friends have ridden it and all your son can talk about is ridding this ride. You wait in line for thirty minutes, but when it comes time to go on the ride, he doesn't meet the hieght requirement and isn't allowed to ride. You wouldn't blame him for being too short. That would be unfair because his hieght is nothing he can control. Being too short has limited his future just as having incredible pain and paralysis of my left arm limits what I can do. The difference is, your son will probably grow taller and will be able to ride the ride. I probably will not ever use my left hand again, maybe the whole arm, but I can't blame myself for not being able to do certain things. I didn't limit myself from doing certain things, the pain and paralysis stopped me and that is out of my control.
I think two handed, but I can't act two handed. Sure I can learn new ways to do things, but not everything. And I have a hard time doing anything with the pain that goes with this injury.I would love to be retrained for something I really enjoyed, but that takes time and money. I'm just 5 months post accident and five weeks post surgery and the bills are piling up. I wish I had the luxury of being a wife and mom while my husband earned our living but I am childless and recently manless. That alone makes me sad, it feels like my future is limited in that way also.
The last thing I want to point out is that hindsight is 20/20. Put yourself in my shoe at 5 months post accident - all the pain and loneliness and grief so new. Than imagine someone saying that the only reason you couldn't have the future you wanted was YOU. That's not fair. Not when your still in a two handed thinking mode -not ever, because being a BPI means accepting limits that two handded people don't have.
I am truly happy for you and your family. I'm glad you found a way to deal with this injury and are now living a happy life. I also must disagree with you that my future IS limited by my paralysis not by me wanting to have that future.
THANX LOVE SUSAN

Hey Sue,

I'm 22 years into this and still run into things that truly piss me off, limitations and challenges that are tiresome, and pain that just won't leave me alone. As a result of my accident, I lost my wife, dog, and 1975 FireBird Formula 400. I loved that car . I was also in a wheelchair for 6 months and underwent reconstuctive surgery on my leg for 5 years.

Yet, I am also blessed in so many ways, things that came over time and are the direct result of the person the accident/injury turned me into. I am a medievalist by education and truly believe that, to quote Aerosmith, life's a journey not a destination. Yout/my/our journey is the painful one and no one said it's going to be easy, and I suggest that you stay pissed off at the injury and the pain forever, I know I am. But don't give them the satisfaction of beating you. Fight the good fight, take your joy where ever you find it, and soldier on. Let time heal you and teach you to live with this. I am a one armed man in a two armed world, but my life is not about being one armed. Most of the time, it's a non factor, and you will get to that state.

I'm rambling now, but hang tough and try to see past today, even tomorrow.

Henry

Susan,

I agree with you but I also agree with Joy and Henry. I am two and a half years into this, two surgeries, and pain as well. I have gone back to school full time and moved back in with my roomies 3 months after my accident. I would have to say, and please dont get offended, with time this will get easier. You are still new at this and new to learn the ropes! Think of it as learning to ride a bike, most people fall many times before they get it right! We have to try new ways of doing things, somethings I even show my two armed friends and they are amazed at how much easier it is!

I have just recently started seeing a shrink because I was having those bad days again and I really HATE them! Yes I am one armed in a two armed world but I am capable of anything that I put my mind to.

Just today for example, I pick my mom and her girlfriends up from the airport. They are getting older and the cold is no fun so I said Ill get the bags! Much to their surprise I carried three of them, two were hooked together, on the good arm, and a smaller lighter suitcase I pulled with the bad arm. Yeah it hurt like hell but that was something that I WAS going to do! You have to tell yourself that you CAN DO ANYTHING! There are many things that I do differently but there really isnt anything that I can think of that I really CANT do!

Some of this will come with time Susan and you have to not give up!!! We are all here for you! If you ever need to talk feel free to call me! I WIll send you my number or you can send yours too!

I Hope I Havent offened you in any way! That was not my intention at all! We need to stick together! Take care and email me sometime! Would love to chat with you!

COurt xo