24 replies to this topic

[tomsov]

Looking back on being in the hospital the only person that I met was a guy that was twice my age. I wondered constantly if this guy was just trying to sell me on Catheters or try to make me join a sport. I talked to a kid once. He had gotten shot and this was maybe four months after my own accident. Truly not knowing what being in a chair was going to bring. This kid refused to do any kind of rehab. He had actually been brought back to rehab because of skin issues. When I talked to him I told him the truth. I didn't sugar coat it and reassure him that he was going to walk again but I wanted him to get better. I am personally complacent with my injury. I accept quickly what I can't do but the slightest thing will set me off in a rage. I have not shed a tear since my eighth grade. Not even for the agonizing pain I endured. Since I woke up from surgery I was defending myself so I did not have time to mourn the fact that I wasn't going to walk again. I have been on this forum for a year and five months, roughly. I have read both Christopher Reeves books, a few no name books, and Mark Zupans GIMP. Somehow most of the information in these books are things are possible. Marks book kinda irritated me a little though. He said at that at this point if there was a cure for paralysis he would not take it. Now a few post back someone was asking for the difference between hope and false hope. How doctors seem to not have the information regarding the outcome for each victim. So what would you say to someone who had just started what you already know? How would you explain the dangers of sores, the annoyance factor of a UTI, the accidents that are unavoidable, the ignorance of insurance companies, and the ignorance of people making your life harder by breaking laws to make your life easier? How do you tell them that as much as they try to make there life return to what it was there is still going to be that one thing.

[D. Smith]

I would say that their life is going to be a different set of challenges that they will overcome one day at a time. That there is always the potential for more but for right now to make the most of what they can do. As far as explaining the different factors, I'd just speak from self-experience. It was easier for me to hear it from another SCI patient than it was my therapist in regards to accidents. They told me some of their most embarassing stories and just said it was unfortunately a fact of life now.

[A trophy guy]

Life's different now but you're still you.

[Edinburgh Colin]

We had a good system in my Spinal unit in Glasgow. It was called Patient Education, 16 week program (true it would not catch everyone but you can't cover everything) dealing with all the major issues, bladder, bowel, skin, AD, sex, mental health, mobility, benifits, support charities etc, post discharge, etc.
One of the things the did was also have someone who was SCI, an ex patient, come in and spend an afternoon telling their story and taking a Q & A session. This was a great opportunity to do exactly what you asked, transfer information to to the newly injured.
Another thing they did was a family and relatives day where close family spent a day at the unit and they had a shortened version of the patient education program and also in the afternoon an ex patient session.
This was a very good way to try and bridge the gap and deal with the immediate and obvious questions. Sort of what we do on here but it was structured and designed to happen 3 time a year and covered everything.
Doesn't actually answer your question directly but I wanted to share it for the new members in particular.
EC

[brockit79]

I would find out what a new SCI interests are and focus on how getting back to that can be achieved. Also day to day issues with bladder and bowel reassure that it can be managed; because it can, OK it takes time but SCI'd to SCI'd it simply has more clout. When I was injured I was privileged to meet a woman mid 40's who was 2 years down the line and living life, apart from the spell in hospital. I think she saved my life although she doesn't realise it.

I was in a bad way until I found a new focus and purpose to work towards; maybe I am lucky to have found it but I saw people who were back in hospital years After being injured; I promised myself that I will not go back in hospital if I could help it.

[Muskie]

For my son he did not want to hear any of it from anyone. It was just one bad day of information after bad day of living the nightmare of a SCI. He was in the Kessler SCI unit so there were all ages. No matter how much they tried to be upbeat and tell him that he was going to have a full life he did not believe a word they said. All's he knew this was the second time in three years that he broke his neck, this time was different and he was never getting better. He was not going to become a Physical Therapist anymore, he would never play his guitar on the porch at night, barhop, raft the Delaware in the summer, chase girls...So words from anyone other than there is a cure would not have made a difference.

[Courtney]

Duke and I end up talking to alot of people who are newly injured. (He is going back to school for rehabilitation counseling so he can help others with catastrophic injuries) Those first few months, you really don't care what anyone tells you. All of Duke's counselors in the hospital were all AB's, so it sounded like a bunch of BS when they told him he could live this great full life.......Having a good support system is key. You have to have friends and family who care about you and know what you are capable of.....you have to have people who will literally drag you kicking and screaming out of your bed when you don't want to face the world. I do think it's much easier talking to another person with an SCI (and at your injury level) Duke learned more from other quads that he did in the hospital. Becoming as independant as you can is also key....

[jules]

I am glad you found that good EC a friend of mine works at both Stoke and Stanmore, he is an incomplete C3/4 who walks with crutches he does the "teaching" for want of a better word. He has also recently started doing advocacy work for new SCIs when it comes to benefits and anything else they want help with. I will pass it on to him that you found it helpful where you were, because he always says to me that he is not sure how much he helps.

[wheeliebear75]

Muskie, on 30 January 2012 - 11:53 AM, said:

For my son he did not want to hear any of it from anyone. It was just one bad day of information after bad day of living the nightmare of a SCI. He was in the Kessler SCI unit so there were all ages. No matter how much they tried to be upbeat and tell him that he was going to have a full life he did not believe a word they said. All's he knew this was the second time in three years that he broke his neck, this time was different and he was never getting better. He was not going to become a Physical Therapist anymore, he would never play his guitar on the porch at night, barhop, raft the Delaware in the summer, chase girls...So words from anyone other than there is a cure would not have made a difference.

I hope your son no longer feels this way. He can still do a few of these things; he can still enjoy the porch view & the setting sun or cool night...just not playing, he can still barhop (just watch out for those DUI tickets they CAN charge us with for OUR WHEELCHAIRS on top of the "drunk in public" and/or "disorderly conduct"), he can still go rafting with enough planning & assistance, & he can still chase girls.

[wheeliebear75]

Courtney, on 30 January 2012 - 02:29 PM, said:

Duke and I end up talking to alot of people who are newly injured. (He is going back to school for rehabilitation counseling so he can help others with catastrophic injuries) Those first few months, you really don't care what anyone tells you. All of Duke's counselors in the hospital were all AB's, so it sounded like a bunch of BS when they told him he could live this great full life.......Having a good support system is key. You have to have friends and family who care about you and know what you are capable of.....you have to have people who will literally drag you kicking and screaming out of your bed when you don't want to face the world. I do think it's much easier talking to another person with an SCI (and at your injury level) Duke learned more from other quads that he did in the hospital. Becoming as independant as you can is also key....

There will be some FORTUNATE not so fortunate people in the Kentucky Tennessee area then! My counselors were both AB. The 1st one though I couldn't STAND (no pun intended)! She always came in wearing spiked heels lookin like she was ready for a hot date OR trying to GET ONE...which was just annoying...but she kept saying "We'll get through this TOGETHER!" (with a disgusting amount of emphasis on the we), no matter how many times I pointed out that WE weren't in the hospital ME was in the hospital. My MOM saw my point & helped raise a stink so I got a different counselor who took a totally different approach.....although Kelly (counselor #2) was great & understanding.....I thought she was trying to sell me on a theory more than actually believing I'd ever ACTUALLY be able to be HAPPY again. I think the more of US going into counseling the better!

[Gunnslinger8]

I found myself in this situation with someone who was recently injured, I don't think there's enough room on this page to explain all the adversities an individual with an SCI will face. I think the most important thing is to realize you can't turn back the hands of time and change the outcome, and you must accept things WILL NEVER BE THE WAY IT WAS, I'm talking about physically...no more back flips on the trampoline. As I was attending physical therapy my impatience and frustration often made being in my presence difficult, I wanted alone time. I would emphasize that a deeper and darker depression you've never experienced in the past will be paying you a visit, and it's up to you whether it controls every aspect of your life and how long it lasts. SCI can enhance the negative traits you had before your injury, you will find yourself in more confrontations with family and friends, try to control mood swings. I found myself biting people's heads off and snapping when they tried to help me when I could do it myself, I guess because I thought they felt sorry for me. At that time I demanded respect, you make sure you let everyone understand clearly when everyone is nice and calm that the last thing you want is pity, yeah don't do that when your face is fire engine red while foaming at the mouth.

If you had relationships with friends that were based mainly on partying (going out to clubs, alcohol or drugs) expect to be disappointed because most if not all will bail on you, TRUE FRIENDS will be revealed as time passes. Remember you're not the only one who feels uncomfortable right after you come home from the hospital, you should explain what goes along with paralysis, I remember the first time I had an intense spasm in front of friends, they thought I was having a seizure. You and everyone in your life learn as you go, family and friends seem to know more about SCI than most doctors, sad but true.

Life expectency for those who have an SCI gets shortened, so I would tell people who have been recently injured that you will be in awkward and embarrassing situations many times, you will have to swallow your pride and ask for help often, be in the presence of ignorant people more than you would like, and while you're in the checkout lane at the grocery store have small children say mommy look his legs are broken, BTW That will happen ALOT, you gotta shake it off quick and move on.

[RZ94]

Good stuff boys and girls.

I had a guy come talk to me in the hospital 8 years ago.....He was an olympic skier/b-ball/hamd cycle champion.

He was a cocky d-bag. He told me the whole will power deal. Thing is I didn't like him braggin' 'bout all the stuff he could do, I just wanted to be able to get around and get back to work. I told him to pound sand and leave me alone. (I was ok wif my situation).

But the kid in the next room was wantin' to eat a bullet 'cause this guy promised him he could do all the same stuff he does wif a lil' hard work. The kid expected to climb
buildings and stuff like instantly, yet he was hardly able to hold himself upright in his bed fer longer than 2 mins. (The Supergimp failed to mention the time and money plus dedication/equipment he'd need).

Another problem was the kid was a T2 complete and this Supergimp was a L1 since he was like 12 years old. Long story shortish, the Supergimp did more harm than good, ain't nuffin' wrong wif sayin' keep at it and achieve yer goals but, this guy was promisin' the world to a kid that hadn't even learned to get outa his bed on his own yet.

Still pisses me off!!!

[edlee]

What would I tell the new guy??? Well,, that would depend on the guy, I guess. If he doesn't want to hear it,, he won't.

If I had to try,, I think I would start with a few of the things mentioned above,, but phrase them as Phases that most of us go through,,, that he might watch for. Things like depression,, the pushing away of loved ones,,, the " I don't care what happens to me" or suicide phase,,, the "why don't my friends come around" ( which fits in with number 2).

We don't usually learn something unless we have some interest in learning it,,, so you have to wait for the guy to find things he wants to know about,, and be there when he does.

Without doubt,, I would try to introduce anyone new to this world,, to this site. Even without asking a question,, a person can glean SO much from searching the archives.

In short,,,, what point in talking to someone who isn't ready to listen?
ed

[tsh3406]

"Sucks to be you...." ;)

[edlee]

I guess I COULD tell him that.
ed

[LeeS]

I've spoken to newly injured people in the past, and I just told them what I've been through and what people I know have been through so they have a rough idea of what could happen as they progress through life.

obviously I didnt just jump in and tell them everything the very first time i spoke to them, did it in stages gradually getting into more detail about each situation and telling them the good and bad about things. I also said to them that it could be a slow process or it could be the exact opposite as everyone progress at different speeds and ends up at different points in life, not one person is the same as everyone on here will know!

I think the method of gentle/slow but to the point is the best way, and if they dont want to hear it, change the subject slightly but n ot comppelte onto something else, the slight change will take theyre mind off the bit they really didnt like to hear!

[S on wheels]

I might quicker ask questions about themselves and have the person open up and then relay my situation only if asked...... or lull in conversation, then I would give my story. I would tell the truth that it's a hard injury to live with but one will learn about true friends and not taking anything for granted, tell stories of other quads etc........ Answer questions that might be running through their head.......... Mostly I would say learn all that they are trying to teach and work hard while in Rehab. It was always annoying when people visited the rooms because my husband just wanted to mellow out but it was good that the different vibrant personalities visited to draw him out of his own misery and take some of the pressure off of me. Everyone at the hospital were very kind and smiling it made a whole difference.

[munkypoop]

I absolutely would help to someone who is a new SCI patient. What would I tell them? I would let them know everything that they should know , like AD and why stretching and drinking fluids are important. Everything that I was not informed of I would make sure they were! I did not know about A.D. until I was paralyzed for four years and went across the country, so I would definitely let them know about something like that. And tell them not to try and be tough and not go to the ER, because your immune system and the illnesses are going to be way different! I would not go to the ER every time I had a bladder infection, and finally I broke down and went and they found two golf ball sized kidney stones in my bladder, it took five surgeries to get rid of those so it is important to go to the ER and to doctors, better safe than sorry!

[rollingtrouble]

I would tell them to let me know when they have made the decision weather to live or fade away. Until then, theres really nothing you can say that will help.

[Astack23]

you're screwed!

[KaterinaWit]

When they're ready, this clip is truly inspirational.

[kiwiquad]

Amazing outlook Brad...thanks for sharing KaterinaWit

[KaterinaWit]

Brad Jacobsen is an amazing fellow, and is the Peer Program Coordinator for the British Columbia (Canada) Paraplegic Association. One of his biggest messages to us has been prepare, prepare, prepare . . . for a trip or event, in order to be spontaneous.

I hope others will take the opportunity to look at this youtube clip. From time-to-time, we all need to be reminded that despite we might be knocked down, how precious and wonderful life is.

Edited by KaterinaWit, 27 April 2012 - 01:47 AM.

[BillS]

tsh3406, on 31 January 2012 - 10:43 PM, said:

"Sucks to be you...." ;)

Basically this, followed by:

But you have to do whatever you can to keep going. Life is tougher for you but it's not impossible. 35 years later and I still wish I could walk but I don't let that stop me from rolling to wherever I need/want to go. Use what you've got, the best you can and you'll still have a great life.

[HairsOnFire]

being a newbie, this is all good to hear. especially the "sucks to be you" part.

thanks.

LOL