Last post Tue, May 06 2008 1:46 PM by whiskeyman1130. 17 replies.
I want to ask your advice on how I should do and methods I should use to become more socially involved and active in my community. Recently, I have become reluctant to move forward because of almost chronic illnesses from bladder infections to pressure sores that have sidelined me for months on end during past years.
It seems just when I get something going, whether becoming involved in a support group, volunteer work or pursuing employment opportunities, my health fails and I am rendered to my bed to recover. Sometimes, I'm almost afraid to try and consider giving up, knowing that in a few weeks or months my health will fail and what I began I would not finish be able to finish.
Sports are a no-go at C4-5, which is depressing because I played four of them in high school and college. I really do not know anyone who is disabled and have a very small or nonexistent support network. Occaisonally, going to a movie or to a restaurant is the extent of my social endevours.
Should I be satisfied or angry at my social progress? Appreciate what I have and what I accomplished and not dwell on my failings? What is your advice?
Am I rambling, I don't know, probably?
I don't expect pity. But it's like when your struggling and you look over and wonder how that guy could afford that car, how did he or she get that job, and so on.
I'm prepared to take the wrath from those of you who say "get off your butt and do something".
I got nothing to lose!!
It’s just, I do not want to assume anything. I have failed more than I would like and want to keep trying but do not want to repeat the same mistakes, whether in actions or frame of mind.
As I get older, I worry about being socially isolated. While I enjoy interactions with many of you on this website and others like this, I look forward to in-person relationships, face-to-face, going to movies or out to bars.
Well I want to ask you again, your advice, suggestions, experiences and even criticisms.
Dillion. You got to hang in there and keep trying. Once you've stop trying..., you're done.
If sports aren't you thing, what about other types of social clubs.. Example. I'm a Jimmy Buffett fan. Yes, a Parrothead. There are thousands of Parrothead clubs around the world. What about fantasy baseball/football, etc,etc... Tons of that going around.
I belong to a scale model club. No pressure involved here. Some guys have 20 models going at one time. Some have one. Some have none. But come to club gathers to just socialize and pick up tips. Where I used live, I hung out at this pub that had a softball team. I could play in that league, but I coached third base.
If there is something you enjoy, I bet there is a social club to go with it. Most of them are on the web at your fingertips. As the bible says.... "Go forth and socialize! " That was the bible...wasn't it?
I understand your frustrations, but there is a whole world out there.
Your state should have a spinal cord commission you can get involed in. If you know of a few other disable people, how about you start a group? Someone has to be the first... Sports are great, you might not be able to actually play them right now but who says that you can not go and support the local teams? I play basketball and we have a whole group of fans that we can count on to come to all of the games and even some of the practices. Look for volunteer things in your community, or go back to college. It all depends on what you want to acomplish. If you sit back trying to make up your mind or waiting for the perfect thing to do you might be missing out on something else fun. I know some of the guys on here have the radio controlled cars they play with and race, model cars as suggested before is fun and I use to do that until I got busy. That is the thing, no one says what ever you pick you have to stay with... You can drop it if you get bored. I would suggest no spending too much on the hobby at first though. Good Luck
I like ArkanzanWheels' idea and I'll tell you why... That's where I met my man. He is a c-5 SCI who returned to school after raising his kids. He is very involved in the network for disabled students and knows everybody on campus (no really - everyone).
You did not say what age you were but in Arkansas here they have programs for older people to go back to college, I think the age here is 55 or 60 to go for free. I know a guy that has taken just about all the classes available in the 2 year college I am going to right now.
Dillon:It’s just, I do not want to assume anything. I have failed more than I would like and want to keep trying but do not want to repeat the same mistakes, whether in actions or frame of mind.
There's a great quote, I think it's Thomas Edison - "I didn't fail. I found 10,000 ways that didn't work."
You just need to find what works for YOU. Any chance you can get your mits on a Wii? We've got one, and the sports games (boxing, tennis, bowling) will just totally blow you away. My arms were KILLING me after the boxing. You really do get a work out. A lot of rehab centers are starting to use them now. My son loves it (and he's a w/c athlete, but he's a para, not a quad). Also see if you can get into some sort of therapeutic aquatic exercise program at a local Y. If the price is a factor, apply for a discounted/free membership. (They have those.) That will help you build up your muscles and keep you from losing any tone, but it won't be hard on you. And any activity you can do that keeps you moving WILL help with other aspects of your life.
As far as getting out, you've received some great suggestions.
State of mind - only you can change that. Depending on your beliefs, I highly recommend reading "The Secret." (They also have a dvd and a website.) It's about the law of attraction. I've always been "lucky" in many ways, but when I read this and kept an open mind (no, I'm NOT a flakey person either, seriously) I have seen improvements in my life.
BUT, all changes start within you. You have to make the decision to take that first step (haha) and move forward. It can be a baby step, but only you can take it. Don't try to make HUGE changes, you'll crash and burn. You can do anything for 15 minutes, as Flylady likes to say. If you can't, then try 5 minutes. Whether that's doing deep breathing excercises and moving your arms around or lifting light weights or whatever. ANYTHING you can do for yourself like that, it's benefitting you. You might not see how 5 minutes a day can help, but if you compound those 5 minutes over an entire year, that's a LOT of hours!
Make sure you're eating healthy, too.
I'm not going to criticize you, because that's like you're asking for an excuse for us to belittle you so you can pity yourself and stay in your hole. However, you do need to decide that today is the day you take a positive step forward for yourself.
You can visit Flylady's site at www.flylady.net and even if you can't/don't need house cleaning help, keep an open mind. What she teaches is WAY more than decluttering. At it's basic level, she's teaching (for free, mind you) how to completely restructure your life, teach yourself new, healthier habits, all with GENTLE behavior modification. You set and learn to keep routines.
Listen to what I say. I'm NOT saying look at the house routines as house routines. If she says, "Put on your shoes," and your new habit needs to be, "Brush my teeth in the morning," then brush your teeth. Look at the METHOD she teaches and apply it to your life. You can use her methods for anything from decluttering to weight loss to excercise to work habits -- modify them for YOU.
Good luck!
HI DILLON . I AM A PARA AND UNDER STAND WHERE YOU ARE COMING FROM. IT NOT ALWAYS EASY , IF YOU CARE TO CHAT , GIVE ME A HEYYYYYYYY RAINEY
thanks for all the suggestions and advice. I feel better today. I guess I was just having one of those moments. Self-pity is not attractive, I know.
Your encouragement helps a lot. It is just those could have, should have moments.
It is just hard to keep getting knocked down.
I'm going to try again and look online for things in my area and follow many of the suggestions you guys are giving me. I finish school and it really would not rather go back. But I will consider courses at the community college, maybe something interesting.
I'm usually pretty positive but I suppose everyone has their moments.
I rented the Monty Python movie and thought how ironic when I heard the song "always look on the bright side of life" that was pretty funny.
And you are afraid that then you'll be perceived as someone who doesn't finish what they start? Or you fear that you will feel that way about yourself?
I wrestle with that constantly. And I'm quite sure that people outside the "circle" do think "there she goes starting something else she'll never finish" again. Actually my ex husband said it constantly. I found myself trying to prove to him I could do things still. Then I realized he should be on my side. Not screaming get a job! So he lost a hottie! Seems like everytime I have a great idea, or want to start a new relationship, even join a site like this, I'll go heavy for a long time, then either the fatigue will set in, or they will find a new spot, or I'll just get distracted (chemo brain). What's worse it doens't look like there's a thing wrong with me. So very few...very very very few understand what I'm dealing with. (I'm not a quad so we are different...but I know this feeling...I am stage 4 metastatic cancer, lung, liver, spine, nodes...new spots all the time. On perma chemo.) Some days its all I can do to just wake up. And that's ok. Sometimes I really do force myself. One of the best ways is to obligate myself to something in advance. Then I'll move heaven and earth to do it. But the key is to make it something that isn't completely dependent on you...in case you really do have to cancel. But that is what keeps me involved in the world. And I have let it go too long and found myself totally isolated. Its worth the effort just to reach out now and then. And there are those people who will run away from a person with a problem, even your friends. Just so you know, its not YOUR FAULT.
I hope this helps. Isn't that what we always say? You'll probably come and go from this site and maybe others. And others will too. Its pretty normal. And don't expect the "professionals" to get it. They don't. I'm actually participating in a study about how the mental health professionals lack tools to help the "young disabled metastatic patient". See if you can find a way to help change perceptions. Even if you touch one person you will feel worthwhile.
Check my website if you get a chance, its also good to have your story out there. So you can point people to it. That way you don't have to start completely over each time, you save your resources, and you don't know how many people you will reach who need to know what you do. That's how I found help initially. So its what I did. Even if it is just one more person out there with a website. (oh and that makeup line? yeah that is one more thing I haven't gotten to yet. So you see??!! ) www.facingforwardllc.com
Peas out,
Lauren
I feel for you and can relate very much. My bladder has really messed up my life and caused me major pain, spasms, sweating, high blood-pressure and the likes. For 10 years I've been battling with serious issues the specialists have no idea how to treat. For a while I couldn't even date and no one really seemed to understand as most of my spasms (as well as pain) are internal. ...Don't let others influence you. You know yourself best. I waited too long before addressing some issues because nobody seemed to understand. I finally stopped listening to others (including most of what doctors said) and started to listen to myself. I'm not over all my issues but my life is more comfortable and I am more productive and therefore happy now. I'm still playing the medication game, but now I make suggestions to my doctors; based on my research and my past experience with meds. Medication that works on most others don't help me... Please email me if you'd like, maybe I can be of help?
Troy
Hi Dillon are there any clubs in your town such as the Eagles, Elks, Moose etc.? These places are generally more handicapped accessible than normal restuarants or bars. People in clubs are friendly and want to go out in a social atmosphere that is more family oriented than bars.
Joining is usually as easy as ringing a buzzer on the front door and asking how to join. Call first if you want to make an appointment. Something to consider.
Hey Brother,
My advice to you is "Keep on keeping on!" Take any opportunity that comes along and places you in the community or a social gathering and live like there is no tomorrow. In this crazy world that we call life, we must appreciate every single second that brings us joy and happiness. Being confined and isolated from society is very depressing. I know this, because I have and am experiencing this. Brother, I am a C5-C6 Quad that lived on my own for 20 years, before medical problems stole every aspect of the life I knew. My 20 years of life were boxed up and placed into storage. I've only been outside of a hospital or nursing home for 8 months since October, 2006. I have lived with my sister and her family when in the community. However, I only get to enjoy this freedom until the end of the month. In May, I am going to have sign papers and go into a nursing home. My life is going to plummet straight downward in a spiral of depression. I never knew my family would request that I live the rest of my life in a nursing home. I'm only 42 years old. This is what I call hard times. Brother, if you cannot find one reason to go into the community, then I hope my troubles will inspire you. Go join a church. If you join the right church and dedicate yourself, then I promise you that you will never be left alone. Should you ever have set backs and be confined to home, then members of the congregation will come to you. At the same time, these same people will want to open doors for you and show you the ways to a lifetime of joy and happiness. The pastor who lead me to salvation is working with his congregation to help find me shelter, a living enviroment outside of the death house. Trust me brother, the Lord is the answer to your problems and this blog. Please don't be turned off by the idea of religion, instead embrace it. I promise you that if you give yourself to the Lord, you will see many doors opened. You may question how I can say this knowing that I'm facing placement in a nursing home and this is a fair question. My answer to you is simple, Jesus volunteered to be crucified when Barrabas was originally the one that cross was meant for. However, Jesus placed His trust our Father. Brother, the devil is toying with me and my emotions as I write you. For days now, the devil has been trying to get me to accept hatred and place it upon my heart. He wants me to go off on my sister and scream from the top of my lungs that I hate her! But, why? How is hate going to improove my circumstances? If I allow this emotion into my heart, then I would have to push the Lord's love or other positive emotions out to make room. This is my cross to bear and that's the opsticle that I must face. Brother, life only last so long. Get out and enjoy each and every second of it while you have the chance. Put your head back up on your shoulders wher it belongs and learn to recognize your many blessings. And again, seek out a church in your neighborhood and go. Your testimony will inspire many able bodied people. The more that you help others spiritually, the more that they will want to help you mentally and physically! I ask the Father to open your heart and eyes to all of the blessings that He is waiting to give you and bring into your daily life. I ask you, Dillon, to open your heart and mind to the Lord and to please allow Him to administer His love and will into your life. If you will, I guarantee that you will find a life that is worth living outside of your home. And, when you find yourself in times of troubles {and you will], you will place all of these sorrows intto His hands and He will deliver unto the answers that you are in need of through your Christian fellowship with the church. I just need you to believe in Him and not delete my testimony to you. Please use my words for inspiration and get out there and live!
Your brother in Christ,
Rob
It's been a week since your initial post asking for suggestions for creating a more fulfilling social life. I was very social before my injury and could not wait to be able to get out among friends and strangers after SCI. I live in a small (7,000 pop.) town, thus not many crips around. However, I volunteer at a Veterans hospital and get plenty of interaction with other PWDs. I belong to a woodcarver's club which also brings me into contact with people from all "walks" of life--pun fully intended.
Most of us suffer medical setbacks, but that should not disuade you from becoming involved with other folks. Currently I am nursing a fractured femur that keeps me fairly housebound. I can still use a computer, telephone and welcome visitors into my home. The reversals should actually spur you into greater action as your health permits.
I see no reason you cannot participate in sports, albeit in a different manner--on wheels. Read Sports and Spokes magazine where you will discover a whole world of sporting activities open to C-4-5 people.
It's ultimately up to you. You can continue to be inactive, hoping some interesting social stimuli falls in your lap, or be proactive and seek out the people and activities that most interest you.
You've asked, we Disaboomers have responded.
I believe Arkansas is the only state that actually has a formal spinal cord commission, but most states do have support groups. The National Spinal Cord Injury Association sponsors many different support groups. I'd check with your local rehab center to find out about support groups.
We're all here for you online, but I know you want something more personal than that.
This may sound like I'm trying to promote myself, but I would suggest you read my book, A Complete Plain-English Guide to Living With a Spinal Cord Injury: Valuable Information From a Survivor by Carolyn Boyles (Holy Unmask, Batman! You just gave away your real name!). It may help you get through some of the rough times. If you can't afford to buy it, your local public library can get it for you on interlibrary loan.
I understand about the lack of sports. I'm a C3-7 incomplete quad. I used to enjoy running and I find myself missing it, especially when I really need to lose about 50 pounds, that I wouldn't have gained if I'd been able to keep running all along.
You have no failings. There are times when things are going to go better and times when things are going to get worse. I don't know how far out from your injury you are, but things do get better over time.
Send me a message if I can help.
Notwheels
