MY NAME IS ANGELIQUE "ANGEL".I READ YOUR PIECE ABOUT PARAPLEGIC SEX. I JUST WANTED TO LET YOU KNOW THAT IT WAS A GREAT PIECE.I HAVE BEEN SEARCHING FOR ANSWERS FOR A LONG TIME ON THAT SUBJECT,MY BROTHER BECAME A PARAPLEGIC (T5-6)ABOUT TWO YEARS AGO,AND HE HAS KEPT HIMSELF WITHDRAWN FROM THE FEMALE RACE SINCE BECAUSE OF THE UNCERTAINTY ABOUT SEX.I HAVE WANTED SO DESPERATELY TO HELP HIM.AFTER PRINTING OUT YOUR PIECE AND SHOWING IT TO HIM,WELL I WISH YOU COULD SEE THE CHANGE IN HIM.A NEW HOPE IS ALIGHT IN HIS EYES.IF I EVER HAD THE OPPORTUNITY BELIEVE ME I WOULD MARRY A PARAPLEGIC,THEY MEAN THE WORLD TO ME AND ARE VERY SPECIAL IN MY HEART.I MAY SOUND LIKE A CHILD WITH A CRUSH,BUT I'M A FULLY GROWN 26 YEAR OLD RED HEAD.IF I DIDN'T ALREADY HAVE A FULL TIME JOB THEN YOUR PIECE WOULD HAVE INSPIRED ME TO GO INTO A WHOLE NEW LINE OF WORK. THANK YOU AND MAY YOU BE RICHLY BLESSED.
It sounds like your heart is in the right place. I wish you and your brother the very best. Remember, its never too late to follow your heart. Even a fully grown 26 year old red head can find the fire to go into a whole new line of work! Just what did you have in mind?
... i just wanted to thank you for your october 24th, 2000 article titled 'My Personal Thoughts on the Sex and Dating scene' . i have recently met a man who is a paraplegic ... to date, my experiences have been zero with anyone you might label handicapped . this gentleman is very nice and i enjoyed our first meeting ... we exchanged a little kiss ... which i liked .... anyway, jumping the gun my thoughts turned sexual and then i had questions ... having just met him, i wasn't going to ask him - i'd be too embarassed anyway .... so, i went searching the net and found your article .... i cried after reading it, because it was simple and truthful and caring ... it answered some questions for me and i am glad someone thought enough about others to write it .... sorry this took so long to say ... i just really wanted to thank you ... ~jackie~
Jackie, You've just made my day.
I am a RN who has recently started caring for a C2 ventilator dependent quadriplegic. "Mike's" injury occurred over 2 years ago but he continues to be in the hospital pending a resolution of litigation. Mike rarely leaves his room, does not want to wear a passimuir valve so he cannot speak, and although he has a normal swallow will not eat. I can take care of his physical needs, but am at loss how to help him emotionally. He basically watches TV all day. I would appreciate any suggestions.
Hello, Thank you for writing. I wish that I could say that this
is an isolated case and although grim, its also rare. But that may not be reality.
Regardless of his level of injury, Mike has some pretty tough emotional hurdles that he
alone may never cross. I can only suggest that both of you begin dressing like Bozo the
Clown and drag his but around town kicking and screaming or get him professional therapy.
The latter being more healthy. Although, the first option would definitely be more fun.
Good luck and remember that your attitude can be infectious. Good or bad.
My name is Michael Fries. I am one year post C5/C6 incomplete due to a car accident. I enjoy reading about people with SCI that live normal lives, not sitting around feeling sorry for themselves. I led a very active life and am just now coming up with ways to enjoy the same things I did before my injury. Your site has given me some very good ideas and am glad people like you are your ideas. In the short 6 months I have been home since my accident I have learned the best way to learn is to talk to other Quads. I am very curious about the Honda Pilot... I used to ride 4-wheelers and dirt bikes so that would be so much fun. How do you control the thing? Are there many mods that have to be done? I would appreciate any info you can give me!
Thanks for the note. It sounds like you're making great strides! The Pilot is a blast. The only modification I made, if you can call it that, helps with the brakes. I used a coated strap attached to the end of the brake caliper in a loop. I place my hands through the strap and when brakes are needed, pull back using the strap. All else about the Pilot works great for hand controlled use even for a quad.
I admire your style of writing and the manner in which you present your information/view points. My name is Erica and I am a mental health counselor. I graduated from Edinboro in 1994 with a Master of Arts in Rehab counseling. I currently counsel children/adolescents at the outpatient mental health clinic as well as operate a private practice.
all about the whole "if you believe in God" thing--my husband and I have
experienced three miscarriages in eight months and I have had 6 surgeries in 14 months. I
was at a bible study at which someone told me that if I had faith, my children would not
have died, I would not have had physical problems (fibromyalgia) and I needed to
"find" Jesus. I thought that I
already knew Him...I guess this person and I are acquainted with different versions...the
experience has taught me the true meaning of extending grace unto others. What a lesson! I
keep telling God that I would like to be done with those lessons but He keeps on sending
Thank you for your positive feedback and comments. It is amazing how some well wishing people regard faith as a pathway to perfect life here on Earth. They seem to forget that faith alone does not provide guarantees of wealth, health or well being like a genie in a bottle. Nature takes its course and we are all part of a life's little system. Faith is what helps us to be humble. I believe that the person who made the comment to you about your miscarriages has not been humbled. That person's strength and relationship with God may never be as rewarding or half as close as yours because you have the faith to continue on even after having been through so much.
In my prayer, I pray for God's
strength to handle to challenges I face with dignity. There is nothing wrong with prayer
and asking God to help us avoid some painful experience. But, faith is proven in our
ability handle it when it does happen.
I found this site by searching for information on quadriplegia. I am a complementary therapist and I have been asked to do some upper body massage for a girl with a C4 spinal injury. I wanted to get some insight in to how otherpeople with the condition feel. The personal expierience has been very helpful. Thank you.
i was involved in a auto accident 3 years ago. dx. as 2nd para due to spinal cord inj. how can i share my story?
Sharing my story and my feelings through a web site has been a very rewarding experience for me because of the feedback from people like you. You have many avenues and ways to share. It can be a test emotionally but opening up in your own productive way can also be spiritually lifting.
My name is Ashley and just recently I met a guy that was in a car accident two years ago. He is paralyzed from his belly button and down. We've been dating for a while now. Every time I see him I like him more and more, but there's always the question in the back of my head "What's going to happen if you get too serious?" You know what I mean? He doesn't seem to let it bother him. He goes on with his life like there's nothing wrong. So why does it bother me? I guess I don't understand everything. I have a question, if we do end up getting married, will we be able to have kids? Will we be able to have a sex life? With him not being able to feel anything from the belly button and down, how does that work? Thats the only thing that I question. My mom asks me why I like him and what makes him so special and I say "The fact that he doesn't let it bother him is what makes me attracted to him." I'm not going to let the fact that he's in a wheelchair ruin what we have. My mom keeps asking "I want grand kids. Will you be able to have children?" and thats my only concern. I love him a lot. Please, if it's not too much, will you write back and answer my question? Thank you.
Ashley, You have presented some questions that only you, your companion, a medical expert and time may tell. I won't side step the core part of your questions. Sex? You can have a very rewarding sex life with anyone you choose to be with if both of you can freely share physically and emotionally. And I feel that the emotional side of the relationship is the most important. Many people without disabilities struggle with these issues every day. Just check out the headlines on the magazine rack as you purchase groceries! You'll read about all kinds of ways to be a better lover and how to turn your partner on. So far the best internet advice for women seems to be showing up naked with a six-pack. That'll get his attention! There are a million experts out there on this subject. Try not to get lost in the hype and the pressure from your mother. If you love this guy and children are what you both want, then anything is possible. Spinal injured men and women do have children just like the general population. Some medical challenges may make it impossible to have children the "natural" way. Adoption can be a wonderful option if your dreams of giving birth are not medically possible.
I wish you the very best and I hope that it works out for you.
Mark, First I must say thank you for such an incredible web page. I am an Occupational Therapy student and have really had a great interest in spinal cord injuries. I am currently working on a paper on quadriplegia so I was searching for some good sites. Your page popped up at a search result. I am soooo glad I found it. Reading the real-life stories of things that you have experienced, feelings you have, etc. really makes me have a better understanding of SCI. You are a true inspiration.
Aside from wanting to compliment your page, I also wanted to ask for your assistance. For this paper and presentation that I am doing, I have to make a piece of adaptive equipment for a quadriplegic client. It can be any level, and I thought why not find out first hand what someone might want. I saw all of the equipment on your page, that was great. I hope you understand what I'm asking for. Maybe I should say this, what is a piece of adaptive equipment (that I could make myself) that you found/find very helpful/useful? I would really appreciate your suggestions. My paper is due MAy 30th and the presentation is June 6th. If you happen to not get this e-mail until after those dates, I would still love to hear from you (since I am considering SCI as a specialty area). I also found some really nice SCI links on your page that I plan to look at in order to find more info. If you have any first hand experiences with OT that you might want to share with me, I would really appreciate it. If it is OK with you, in my presentation I am going to recommend that each of my classmates visit your site so that can have a better feeling and understanding of what life as a quadriplegic is really like. Thanks again for this page! Ligeia
Ligeia, I'm afraid that I missed your May 30th deadline. But
thank you for writing and sharing my web page with other students. Good luck on your
presentation this week. Let me know what you have chosen to make. If I could have anything
adapted to make my life easier, it would be a mailbox that shreds bills and sends the good
mail right through to the kitchen table in the house. This invention just might have broad
appeal! Other more realistic adaptations seem to be needed for the back yard chef.
Spatulas and steak flippers that are friendly for the quad hand might be a nice product.
Of course then, you would have to test them out. Don't forget to invite me to the first
testing and quality inspection!
dear mark, hi there! just wanted to say that i recently became involved with a paraplegic man, was going all thru the net looking up information and found your article. it was great! its amazing actually how little information i can find on here and its great to find something like yours that can give ppl like me a bit of insight. so just wanted to say thanx and would like to see anything else you might have written if its not too much trouble :o) take care
Georgie, I wish you the very best with your new relationship and
thank you for your kindness. Aside from sending you some old love notes I found from high
school or a few boring business memos, I have not written much else yet that's not already
on my web site. But hey, I'm open to a book deal!
I really can't believe I am emailing someone I don't know....I am pretty new to this "internet" thing...yes, there are still of few of us out here. I just felt this need to tell you how immensely I was touched by your website. I laughed, I cried, I learned alot. I loved the pictures of the planes....my dad was a test pilot in the air force and I grew up going to air shows and he would get his pilot buddies that flew in the show to take me up and do barrel rolls and such. I was hooked. It is such a rush. One of his air force buddies and his family were like family to us. One of his sons became a quad ( waaaayyyy back in the 70's) He was like my big brother ( I am an only child) We were so close and I would hang out with him all the time, when I left for college, I cried and cried and didn't want to go because I didn't want to leave him. I had all these great plans how I was gonna stay in Iowa and become a nurse and he was gonna live with me, and yadda, yadda, yadda ( he was like 12 years older than me) He would have none of it, told me to go out and live my life go to college, meet someone special yadda...So I did, he passed away about 5 years later...I never talk about him or even let myself remember him because it hurts so much. I really feel like I let him down. He always told me I was someone special because I totally accept him after his accident and I didn't let it change our relationship. He told me maybe God had plans for me in that regard. SO I went merrily along my way with all these painful feeling buried ( yeah I know, not a good idea) and then a friend of mine that I work with at the hospital (not an rn yet, but getting there) discovered that drinking, driving a 3 wheeler, at night , over unfamiliar terrian wasn't a good idea. I went to ICU to see him as soon as I found out and being in that room seeing him like that brought back all that "stuff" that I had "stuffed" and I didn't handle it very well. SOOOO, which brings me to why in the world was I looking for quad sites and ran across yours. I wanted to be able to show him something that said, your life is NOT over. YOUR SITE IS PERFECT!! I love it! I love all the stuff you do and all the things that have been invented to make life easier. I am very excited to share with him what I found. It's weird, because before, with John he was 12 years older than me, and I am about 12 years older than Nat. God has a weird sense of humor...ANYWAY, I imagine you are totally bored by now, so I will close and say thank you so much. It felt so strange reading the stuff you wrote, I really connected with what you wrote and how you think....keep it up! I'll check in from time to time to see if you add anything new. The pictures are incredible! Again, thanks!
i m ryan, c4 5 incomplete. killer page. injury cost me everything and at 23, im bored. so many question, shabby typing skills. only 10 mo post and just got manual chair. getting better at it. too hot in az. need to move. 102 tomorow. arm hurts. will get in touch again. bye
Ryan - 10 months may seem like a long time when you're trying to get familiar with this new body and all the stuff that comes with it. You have a lot of choices. Its up to you to take control and fill your time with people and things that will help you feel like a whole person. Keep pushing the envelope on what you can do and you'll become the hottest thing in Arizona!
My name is Kim Pate. I'm a c-5 quad since 1987. I found your website after reading of it in my New Mobility magazine. I just thouht it was great...especially the inventions. The segment concerning planes reminded me of a ride I took on a seaplane in Kentucky for the experience. You are probably already aware of these options, but I was curious if you tried snow skiing or sailing yet. I found both to be enjoyable...skiing was a real adrenaline rush. Hope you have or will if it at all interests you. Your site is uplifting and we need more positive role models like yourself who offer hope of a happy and productive life despite a SCI for all alike to be aware of. I wish you continued success with all life has to offer. Take care!
Kim, I haven't tried skiing or sailing...yet! Sailing
may not be my thing but I've read quite a bit about skiing (water) and it looks like a
blast. Thanks for the beautiful smile. I don't know that I would consider myself a role
model but I do believe that we all have our own little corner's of the world we need
conquer. And to offer some help or to share some of my experiences in a way that someone
else may benefit, is only pay-back for so many that have helped me along the way. I also
wish you continued success with all life has to offer.
i just loved your site ! i have a 4y old son in a wheelchair (black & yellow - steelers) he has spina bifida. he's great , he shows me things in life no adult could even come close to, yet they are the greatest lessons ive ever learned & learning. i also have a 2y daughter( not in chair) the two are a pair made in haven. i could understand how you feel about women wanting to date a guy in a chair. iam in a almost similar boat, what guy would want to date a woman whom has a child that is disabled. not many. i try not to let that bother me to much , but at times it does get hard. but then i turn it all around and put it all in to my children. they need me to be happy not sad or down. and i know someday the right person will come along and it will have been worth the wait. ..... LOL@ME blah blah blah ........ srry. i just wanted to let you know i justed loved your site, it was a nice pick-me-up. oh and i loved your inventions, iam always trying to come up with stuff for the kiddies.
D.J., Go Steelers! Although I'm not much of a football fan, I can appreciate your son's chair. Thank you so much for your kind words and thoughts. One of the most attractive things in a female for me is their love for their children. Just like an outward appearance can be a determining factor for many people, the inner beauty in loving your children can be just as attractive. You already have all it takes. I wish you and your family the very best!
My name is Candace, I am in grade 9, live in Calgary, Ab, Canada, and am for some reason or other interested in paralysis! The first time I got interested in it, was a couple months ago when my school went to a programe called the party programe. It mainly talked about making choices. When went into the E.R, and there was a dumbie hooked up to all these tubes and stuff. It was supposed to look like, if you were to come into the E.R, with a spinal cord injury. Then a couple of injury survivers came in and talked to us about what happened to them. One guy jumped off of a bridge head first, and became a quad. Then at lunch, we were given the scinario(I don't think I spelled it right, sorry!) where we had to eat as if we sufferd a spinal cord injury, we put on neck braces, and couln't use our hands at all!!! It was really weird, but when we left that day, I keeped thinking about it. When I got on the interent, i went to yahoo and typed in "quadriplegia" and it brought me to your website. Before I went to the party programe, I wanted to go into emergancy medicine, but now I really want to. I want to know everything I can about being paralized, I think it is sooooo interesting. This may make no sense to you, but I would really like an email back.
Candace, You have a heart of gold and a wonderful spirit. You and your friends are coming into the higher risk age bracket for SCI and your awareness may just save someone from a traumatic SCI. Knowing what you want to do already gives you an edge up on so many others. Most of us who are older and have years of education behind us are still trying to figure out what we want to be when we grow-up. Keep on trying in what ever you do and don't become one of those "dumbie's!" I wish you the very best!
Thank you for the advice. I will try really hard in school so I can make it to medical school. I have one question I am hoping you can answer. When we ate our lunch that day, why couldn't we use our hads, meaning, when someone is paralized, why are they unable to use there hands? Does that make sense?
As you learn more about the spinal cord, the answer will become more apparent. But here is a simplistic way of looking at it: Levels or abilities in people with spinal injuries are referred to by the vertebrae where functional and/or physical damage occurred. For instance, I'm a C6. That means that I have abilities related to the 6th vertebrae from the base of the skull. The C is for Cervical(neck). Each vertebrae down the spine has nerves that leave the spinal column and make the connection between the brain and to the extremities of the body like the hands.
Very similar to a telephone line that has been broken, only the homes that are below the break in the line will be affected. It doesn't mean that your phone is broken, only the connection! Someone who has had a spinal cord injury in the neck will most likely have their hands affected. If the injury was lower in the back like a T8 (T=Thoracic), the paralysis will be much lower in the body. So in your experiment at school, they were simulating life skills for someone who may have had a neck injury.
I hope that this has helped answer your question. And don't be afraid to ask!
I'm a para in Columbia, SC. Was injured in '83 - car wreck. You are the man. I have been a competitive athlete since and prior to my injury. I know so many who have given into their injury and it's good to see your web cite. We have many similar stories and experiences. The way you have dealt with folks is similar to mine and sometimes you just cant help but feel sorry for the folks who don't know. The K-Mart lady story was fantastic. Can't give you enough accolades, I appreciate the time and effort you must have put into this piece and would one day like to hook up. Very impressed and thanks for spreading your word. Bob Masella THE MASELLA LAW FIRM
Bob - Thank you for your note. Sports and activities have always been more fun and exhilarating for me if I'm playing. The sidelines have never offered quite as spectacular a view or experience.
Hi! I read your article on sex & dating on Paralinks, and I thought it was very interesting, not to mention full of snappy comments. Actually, it wasnt at all what I was looking for, which was info to help with my latest piece of homoerotica, but Im the sort of person who will even read encyclopaedia articles for fun -- anything that looks interesting and Im on to it. Anyway. Get to a point, Katta, and start arguing, swhat I do best. Your claim that girls dont have "Tall, Dark and Disabled" as a description of their dream guy surprised me a little. For one thing, my best friend from junior high, whos a wheelie herself, claims that the guys have an easier time finding dates than the girls have -- and her social life is still better than mine. I wondered for a second if it was only my close relationship with a para that made me consider a guy on wheels, but I asked the girl I was currently chatting with what she thought. Direct quote: JillliJ: hehehehehe, I see nothing wrong with that description So its not just me, and its not just Swedish attitude vs. American attitude, cause shes American enough. I mean, no, I wouldnt put in "disabled" in my request for a perfect man, because that would be going a bit specific, and we all know what happen to girls who have specific wishes for boyfriends, they end up with the guy next door whoever he is. But if I were to specify my wishes beyond "anything that breathes" (plus Spike in "Buffy", who doesnt), it would probably be something in the line of "slightly androgynous brunette who is easy to recognize". A wheelie could definitely fall into that category. So could a lot of other people, granted, including really weird stuff like demons and drag queens. (And since I have now proven to be a perv, you can stop reading.) There are far too many guys that can be called "tall blond with a nice arse", while "midget redhead with a great smile" makes you know who it is you fancy. Im not saying Warwick Davis wouldnt still be sexy if more guys looked like him, but if every second guy did, I might lose interest, yes. While were in the celeb section... not much going on there, in the "on wheels" section. Maybe if I went from the arts into sports, but my interest in sports is limited to not turning channel if I accidentally zapped into billiards. (All balls are evil, but Ill make an exception for billiards.) Actors are few and far behind, fake ones not counted. (Plenty of fake ones.) Chris Reeves is a wooden mannequin and always was. Mitch Longley isnt ugly, but hes definitely not my kind of guy. There's a Swedish comedian with CP that is okay, if you oversee a disastruous haircut, but not quite enough to make a heart pound. Still, thirty years ago, the only cute black celeb was Sidney Poitier, so waiting could be worth the effort.Im not saying "girls arent that shallow". Girls are incredibly shallow. But girls have different tastes. Some girls like Fabio. (*shudder* All that oily brown meat makes me think of fried chicken.) Also, most girls, according to my experience, care more for faces than bodies. Its like in "The Magic Flute" when the hero falls in love with the heroines picture. Its incredibly shallow and stupid, of course. Still, its her face he watches. No hands, no feet, the story tells so. Then again, I suppose some girls would worry about the sex. All girls dont have mouth fetischisms and slight bi tendencies, to prevent them from *needing desperately* to know that everything will be as written in the books. I can get that. I wouldnt join them, but I can get it. (Must be tough luck when they find the guy they actually did choose is a much worse lover...) I dont know how to finish this e-mail. Im rambling. That happens a lot when I get into arguments, because it seems theres always more to be said and more associations to follow. And if I strike you as insane, plesase remember that when you put your e-mail addy in an article, you have to *count* on insane people trying to avoid work to write debating letters. *grin* So, quit now, best wishes, et.c.
Katarina "Katta" Hjärpe
Katta - Ever thought about being an attorney? You have set-up your argument well and even brought in expert testimony. But as sound as your convictions may be, the missing element is acting on the opportunity. You are absolutely right about being too specific about the type of person you most want in your life. In fact, I've chosen the opposite direction. I'm weeding out the ones that aren't near perfect for me by dating them.
You have a great ability to take the sublime and twist it a little further into reality. That is a skill! Don't loose it. I must admit that the "All Balls are evil" thing was a bit alarming but so is Fabio and you covered that in the same paragraph. So what's the deal with being a perv anyway? Is that right reserved for the anti-culture or can the mainstream join in? Best wishes, Mark
I just wanted to let you know I thoroughly enjoyed reading your article. I'm a single female living in a very fast paced city (Miami) where looking "the part" seems to be what it's all about. I bought into that whole belief until about a few months ago when on a lonely Saturday night I saw a handsome guy in a wheelchair in Blockbuster. I couldn't bring myself to say anything to him, and just thought oh well to bad. Well how unlikely is this but I saw him again this past Friday night in Blockbuster. Unfortunately, I didn't have the opportunity to speak because he was leaving and I was preoccupied with my four year old nephew. But the butterflies were there indeed, which was a huge surprise to me, I mean like you mentioned in your article who thinks of their dream guy as tall, dark, and disabled?
While driving home so many thoughts went
through my head, how does a relationship like that work, how would we enjoy a night along
the beach, and of course can he have sex? That's
how I came across your article, it mentioned both sex and wheelchair in the title. I feel
as though I've been rambling when all I have to say is the next time I see him in
Blockbuster or anywhere else for that matter, I'm going to make my move for sure. Why should I let my thoughts of the unknown stop me from
if nothing else forming a friendship, if not more. Thanks
for the insight,
Jamika, "Looking the part" seems to fit into most cities and towns but I believe your right that the image of Miami does bring on the scenes of a postcard beauty. You've made two great strides in such a short note that a lot of people never get out in a lifetime. First, you've allowed your heart to feel something regardless of the minds ability to throw complications at it. You were able to see past the chair. And the second thing that I find is even more wonderful. You seem prepared to act on it and accept the person as a potential love or friend. I hope that you are able to introduce yourself and the meeting turns into a great experience. Have you given thought to entering the motivational circuit for women as a speaker? Someone like you could save guys like me the whole embarrassing tongue twisted stumble over a simple hello. - Mark
Just a note to let you know you've created a great site here. Thanks. My wife was injured three years ago MVA (C-5,-6,-7 complete) and we have been slowly "adjusting" .... I hope she'll take a look at your site and some of the tips you share. For us one of the biggest problems has been steady, reliable attendant care. Any suggestions? It seems to me that if there is a market for mail-order brides, maybe there is is a similar one for mail order care givers? Anyway...thanks for the site.
Bob - Attendant care can be a real problem. I've found that it depends on your area, your network of friends, the economy and you. I've been very fortunate to have had some very reliable helpers that never before were involved with personal care so don't focus too closely just in the nursing field. I haven't hit the mail order bride catalog yet but if it looks like the Victoria's Secret booklet I'll have my credit limit raised! Consider contacting outreach programs through local volunteer services or nursing homes. They may be able to offer the names or even make introductions of good candidates. Something to keep in mind, when things are going good and you don't need help, that's the best time to find someone. Take care - Mark
I am a college student who was born with C.P. I found your site while looking for information to give to my friends about the disabled culture. As of lately, they have all wanted to 'heal me' whatever that means. It not that I don't believe God can do miracles but I don't think I need one I was born with this; I am not sick and don't need to be prayed over. I just need to find a way to express this to them. You site is great. I especially like the two stories about people trying to heal you. They gave me some insight, as to how my friends must feel. As well as a comical view of the whole situation thanks
I just read your experiences on dating, etc. and I am very thankful for a positive story. My boyfriend just had a fall and is paralyzed (C6/7 spinal fracture). He has movement of both arms but not hand movement or at least finger movement yet. He is on a ventilator now but hopefully will be off it next week. He has been in the ICU for almost 3 weeks now. I have not been able to see him for a lot of reasons, but his son has been keeping me posted on his condition daily. Yesterday, his son said, "well dad is back to being himself". I said Well, that's good. Well, not necessarily. He now thinks he doesn't want to live. Obviously, we have to take this one step at a time. My boyfriend is someone who places a great deal of value on physical looks and activities. My dilemma is am I being selfish because I want him to live when he seems to think everything is lost. It is his life after all. I am going to do all I can to convince him that living is worthwhile and that what matters is on the inside. It sounds corny, but I know it's true. Anyway, I am so glad to hear a positive outlook from you and hope that will be on my mind as I face the unknown. All the best of everything to you! Thanks-Celia
I have just started dating the sweetest man I have ever met and he is also in a wheelchair. I loved reading your site it has helped me better understand some of the things he goes through and questions I had about intimacy. I had been unhappily married for the last nine years and just after I split up with my husband I met Brian. He is absolutely the best thing that has happened to me in a long time. We have so many things in common and have just clicked like it was meant to be. Thank you for sharing your stories - you are helpful not only to those with paralysis but to those of us who love them. I still have so much to learn but I am hopefully going to spend a lifetime doing it. You are a very neat person keep up the good work.
Thank you for sharing. There are a lot of people that would have shut the door on relationships all-together after an unhappy marriage. I'm glad to hear that your heart is still open to new possibilities and you're willing to take that risk. I wish you both the very best! I am curious. How did you meet and how did the relationship get started?
I was so excited to hear back from you - I have been back in your web site several times since I wrote you - I just love it. Well how we met is kind of different something I had never done before we met on the Internet - yahoo personals. I use to think people who met that way were pretty silly. I love it now. He is the best thing to ever happen to me. I must say I was one of those people who never thought she would get involved with someone in a wheelchair - I know that sounds bad but I just never pictured it. I had only talked to him a couple of times when he told me he was in a wheelchair and it never once crossed my mind that this was someone that I needed to back away from. I think we were meant to meet. I think he was a gift from God and I don't intend to let it go.
I just wish more people could
see past an injury to the wonderful person that is there - I have been blessed with him
and hope that this can happen to others.
Thoroughly enjoyed your cite!! You put a smile on my face quite a few times. I think what you have done here is amazing and infectious to so many people with paralysis and SCI so they can laugh and smile at the world too, a rare gift bestowed. I was very interested in your "feedback" section. A lady by the name of Cindy Lee, a case manager from New Hope Home Care, wrote you with some bent questions, lol but what worse I understood her, even about the monkey!! You see I am "other mum" to a wonderful 6 year old boy named Taylor MItchell. Taylor has one of them but what not all is that Tay has SCI but he is a ventilated-quadriplegic C2/C3 incomplete. I'll try not to gush with pride too much....so if I ramble too much forgive me I am just so proud of our Taylor (Ann Mitchell is his real mum - for the past 8 years we have been the closest friends and brought our kids up with respective spouse too, together) He is exactly like Christopher Reeve except Taylor is the youngest child to have sustained such injuries (at 2 yrs) and survived. Even our Specialist Doctors over here in OZ were faced with a 2yr child in a coma, respiratory down, shattered C2, broken C3, can't assess brain damage. Most bizarre car accident too. Three cars involved, no one actually hit each other. Taylor, his mum, Ann and Daryl, Tay's step dad got run off the road in the confusion and they ended up across the road and hit open drain at 70kms (Brick Wall Stuff!). Cutting to the chase, Mark, wake up!!! hehehehehe.........
Taylor Mitchell has beaten all odds and there were just so many, Mark!! I will be enclosing some photos in this letter too!!! You'll know why I am so very proud!! Question to you now:
Would you like to put me in touch or Cindy Lee can contact myself on the email address you have there?
Taylor spent 2.5 years in Royal Childrens Hospital, here in Brisbane. *^%$#@ Insurance company prolonged the move to a family set-up, Ann who was pregnant at time lived with her 2 other children in a one bedroom flat until Matty was born 5 months later, Daryl and Ann had split thru the pressure of it all but I assure you that was at the beginning and they have been together thru all. So he is now at home 3 years soon and a Nursing Group assign from the hospital is 24 hour care. He has a "What Disability" attitude, smiles constantly, he can get that chair around the most amazing ways almost perfect precision. We (Ann & I) have a wicked sense of humour and so does Taylor and he upset some of the carers with his sick wit at times! Any how he has been all soughts of places but being ventilated temperature plays the most important role in outdoor activity. Unfortunately camping is just not the go but we have pitched a tent in the back yard of his home and made an open fire, cook marshmellows, and had a great time. The difference is that it was at night and the next morning - the coolest times. Taylor's room is like a personal ICU deluxe, its got the biggest fire engine bed I've ever seen.
He really understands about his injuries, whys and hows. He can't feel anything past bit above the base of his neck. He has violent spasms in areas I touch, like a hand or foot, and I know that he can spasm his hand when he concentrates on it hard enough - little tyke wont do it for anyone else when I ask him, but Ann did peak from the bathroom and saw him without him knowing, so there hope there!!
Instead of rambling anymore otherwise you'll be cross-eyed soon I'll leave you with some pictures that say everything and more!!! much hugs to you, Mark and your lovely family xx (the photo is Ann & Taylor, makes you giggle, eh!!)
You have absolutely made my day!
Taylor sounds like one of those kids that most everyone who comes in contact with just melts. His challenges can't begin to be clearly described or foreseen but his opportunities are endless. All kids need love. Taylor needs a lot of love. It sounds like you are in a perfect position to give him as much as he can handle.
The photo is priceless. The basic necessities of life
and the greatest joys will be alive in your heart as children like Taylor remind us of how
precious every moment can be. And he can teach us just how much is possible with so
(I have linked Taylor and Ann's picture to their names. Above any and all other pictures on this site to see, this one is very special.)
very cool. loved your essay. i was searching around the net for more info on my boyfriends SCI (i met him two yrs after his accident) and I fell upon your essay and it was so good. The ironic part is, where you said its not easy to bring home a guy in a wheelchair but its gotta be better then the blue haired punk rocker from high school... well my mans a blue haired punk rocker AND in a wheelchair! honest! although the colors fading...hehe...the best part is my parents like him more then any bi ped i ever stumpled across. god luck and godspeed in the future,
Thanks for the laugh and the well wishes. I've decided its not a good idea to drink water and read email. At least my monitor is good and clean now!
I wish you and blue the very best!
Hi! My name is Rebecca and I just read your article and I wanted to thank you for what you wrote. One of my dearest friends, Alex, is in a wheelchair and I confess that the first time i met him I thought, "I think God wants to heal him". i'm not so sure anymore because I have
seen that God already is healing him, deeply, inside where it counts. Alex has found true life and true love and true friendship in ways he wouldn't have it he weren't paralyzed. Anyway, I am glad that you were able to be so kind to the woman at K-mart, and to forgive her ignorance and prejudice. I hope Alex will forgive me for my shortsightedness. If you have time to write back, I'd love to know more about how to really listen to and be compassionate to someone who is paralyzed.
Thank you and I know God loves you!
Thank you for your thoughts and insight. From your brief note, I would guess that you already have all that it takes to really listen and be compassionate to someone who may face different challenges than you. Its my feeling that we gain so much strength from being open to new possibilities and putting aside our predispositions especially in religion. Your instincts were not wrong to pray for Alex to be healed from his situation. Your spirituality allowed you to see that he is so much more than a victim. Your friendship and compassion may be the bond that helps Alex reach his full potential.
I wish you the very best.
I just wanted to let you know that your web-site is very helpful. I am the mother of a 20 year old (son). He was in a car accident 6 months ago with a C5-C6 SCI.
It is nice to hear the success stories of others who have SCI. Since his injury is still pretty new we have our good days and bad days, as I'm sure we will for a long time. Our son has a pretty good outlook on things, but it is still hard. I see that his friends aren't coming around as much as they use to, except a couple really true friends. Can you give us any suggestions on what to do on those days that are extra hard to handle. And do things really get easier? I keep reassuring him (and myself) that it will get better with time.
Thanks for your time. Any info you can give us will help.
Thank you for writing.
I'm glad to hear that your son has the strength and a positive outlook to help him reach his potential. Regardless of injury, income or interpersonal relationships, bad days will happen. As a mother, you may feel the deepest desire to ease your sons pain and try to make things as easy for him as you possibly can. Most Moms can take this to a whole new dimension. Don't forget that he is a 20 year old man with an independence of mind. There can be a real conflict with his need to feel in control in an out of control situation. Hence, a bad day. The more you help, the more he may feel out of control making a bad day worse. The irony is, he may really need your help because of the physical limitations. This doesn't have to be a loose loose situation. You probably know your son better than anyone. Be cautious not to assume you also know what he needs and when he needs it without asking him. He will feel much more self assured as soon as he can take control of his personal care and he can create the environment that works best for him. Mom, let him struggle. Leave the room if you must. Let him vent. But give him the same independence of mind as he was accustomed to having before his injury. Sounds easy. But it can be torture.
I've said that in my own situation that I have it easier that those around me. I don't have a choice but to deal head-on with my own situation every day. My friends and family have a choice. Guilty feelings, the sense of inadequacy, not know what they should do or what to say can lead to some distance. Your sons lifestyle from before his injury and now has changed. His friends will change. Its hard. Very hard. He may feel the need to hold onto those friends because they contributed to his pre-injury lifestyle and he may not be ready to let go of that. They don't have to all disappear. But the cream will rise to the top. And new ones will emerge. If he continues to be social, he will find so many new challenges, embarrassing situations and make some of the best friends he will ever know.
Be patient Margaret. Do all the things for him that you would have done before his injury. Be aware of those things that you would not have done for him before his injury that you are doing for him today. You may feel the desire to step in manage those things he struggles with and do them for him or direct others to do for him. This is now his job. Get his input and give him the choices that can help him feel in control. And above all else, continue to give him all the support and love he needs to experience all of the things he wants to accomplish.
I wish you and your family the very best!
I just looked at your home page, and enjoyed it very much.
I am 21 years old and am a t-8 complete SCI. It happened about six months ago, and I have already moved on with my life. My Jeep accident was on July 2, and I was out of the hospital on July 28. I did some rehab. at Craig Hospital in Denver and then started my last year of college, I have one semester left. Everyone around me is so proud of how fast I recovered and gotten back to "normal." But to tell you the truth...(and you are the only one I have told). I am scared. I believe that I am intelligent, so I don't need you to tell me that I can still do anything I dream about. I know that. But, I miss dancing, and I miss carrying my fiancé to bed when she falls asleep on the couch. I am scared that things will pile up and make me sad, or angry, or whatever. You have probably heard this before, but, I don't know why I am telling you this. Maybe because you sound a lot like me. I am a communications studies and theatre major, I did some local stand-up stuff before my accident, and I have done just about every extreme sport that mtv covers. I thought the stuff you wrote about sexuality was interesting. My problem is that I can't break down my own little sexual walls. I miss orgasms. I don't like the fact that tickling and kissing and touching are my only options, granted they're better than nothing, but I think I am allowed not to like it. I feel bad that I can't "perform" as I used to. I am no Dirk Diggler either, but I was at least a Chest Rockwell...anyway, write me back if you get the chance.
Thanks for the note.
We do sound fairly similar. Well, except the comedy part. And if you can sing, I'm definitely not like you. But as for the Extreme stuff, there is always something else coming out that I'd love to do but some things just aren't practical or safe at the C6 level. Then again, some people with full function aren't safe at any level.
Your comments on sex are right on target. You don't have to like your options. But take the time to get to know your options. I really miss all of the functionality and orgasms that a good physical relationship has to offer too. But I know the feelings and I know that I don't want to give up the options I have today.
After a number of years of being in a chair, the frustrations seem to change and take on new faces. The fears and frustrations for me are more along the lines of being too routine and hum drum. That scares the hell out of me! I have a need to stay busy both physically and mentally. And that's a life long challenge.
I came across your site while doing research on quadriplegia. I read through your site and I enjoyed every moment. I also read a few of the questions and comments section of your site and nearly fell over when I read the note from Katie who had recently started dating a man who was paralysed.
My name is also Katie and I also recently (a little over a month ago) started dating a man who is a c6/c7 quadriplegic (kinda freaky huh?). My b/f and I don't have problems with communication and we are very open with each other. He was in a car accident 7 years ago and I am the first person he's dated since his accident. Needless to say, we were both very scared starting out, but we both firmly believe that if we love each other, there's nothing we can't overcome. Your section on sex & dating really hit home. Especially the part about startled parents. I'm taking him to meet my family for Christmas. He's a little worried about how they'll react and in a way I suppose I am too. Although it doesn't make much difference what they think (to me), its always easier on a relationship if everyone gets along.
I don't know exactly what it is that I'm looking for here. I just know that I want to understand and help in any way that I can. This has been the most challenging, yet most rewarding relationship I've ever been involved in. In him I see my own future. We try to take things one day at a time. As far as being intimate, sometimes we have to get creative. I just wish there was more I could do for him. Anyway, I'm just rambling on now. Thank you for your time.
Thank you so much for your thoughts. I hope that your parents have the same love in their heart for you and your happiness as you seem to have for this person in your life. If they do, I imagine that they will honor and welcome him with open arms. Keep in mind that more questions than answers often surface somewhere along the way and you may not have all the answers. Don't doubt your heart if it feels right. I'm still learning about opening up and trying to identify that fine balance between understanding, sharing and giving. It sounds like you are well on your way.
I hope that you have a wonderful Christmas.
PS - Send me a note and let me know how the visit goes.
Thanks for the reply. The visit with my family went wonderfully. They fell instantly in love with him. I was very relieved and now feel like I worried over nothing.
I came across your page the other night as I was doing some research on the internet on spinal cord disorders. I found it very insightful and also very humorous. I have not had a SCI but I have a spinal cord disorder called siryngomyelia (don't quote me on the spelling) which I was diagnosed with when I was ten. Over the years it has caused me mobility problems and I have undergone numerous surgeries to alleviate the symptoms. I walk with a crutch and I do okay but for anything that requires endurance I have resigned myself to using a wheelchair. I have always been very stubborn about my disability and I have never used it as an excuse for anything in fact I would say that I have probably used it as an excuse to do more and prove to people that I am not helpless. Forgive me if I talk in circles it is early morning and I work third shift.
Over the last couple of years I have read and explored many web pages similar to yours but none have ever grabbed my attention like yours did. The reason I have been doing is research is because my doctors in all their infinite wisdom can no longer do a whole lot for me. My only option at this point is surgery and there are too many things that are too uncertain for me to go through with it. The two biggest ones are that there is no guarantee that it will even help my condition and the other one is that it could end up doing more harm than good. I could lose my ability to walk all together. The irony of the whole thing is that either way I am still deteriorating and I may end up in a wheelchair anyways. More than anything that scares me. I have always been the type of person to do things my way and with 110% of my energy behind it. I don't always like change but I find myself embracing it rather than cursing it and that is why this fear is so hard for me to accept. I know that your situation and circumstances are nothing like mine but there is a part of me that thought or hoped you might get what I am saying or at least trying to say.
Part of me feels really foolish for doing this and
another part of me thinks I am crazy for talking about this with some one I don't even
know. Either way I guess I have nothing to
lose. I look forward to reading more on your
web page as you add to it. Thanks for
listening or reading which ever way you want to look at it.
There is a part of me that is hoping that you will respond and tell me what an
idiot I am so I will wait and see.
Thank you very much for sharing. Reading your message was not difficult. In fact, it sounded very familiar.
I think we probably have a similar outlook on our abilities, fears and motivators although our situations are very different. Each persons situation is truly a matter of perspective. On the surface, it may appear as though some have it far worse than others. And in reality, there are those that face relatively minor issues and they can be just as mortified, stifled and set-back as the most complex and life altering problems ever endured.
We all have to pick and choose our fights wisely. To be a champion of your own situation requires doing a lot more than surviving. It demands that you get satisfaction from achieving more than status quo for your ordeal. Not all days are perfect and not all days are very satisfying. But the greater percentage of those days that you can be in the positive, you will have a far greater outlook even though your challenges seem insurmountable.
I wish you the very best and I do see you as a champion.
Thank you for your thoughts, openness and input. The best way to address all of your questions, thoughts and concerns is to elaborate with my responses within the email you sent to me. So, in my humble opinion to sum up the advice spelled out below. I recommend a little home study and the sooner the better. Well .... Uhh... read-on...
Dear Dream Believer:
I am 30 (soon to be 31) yoa. I am a SWF. I really enjoy visiting your website and felt that you were the person to seek advice from. I also know a gentleman who is confined to a wheelchair. I think he's a great guy and not to mention rather handsome also. I feel that I might be attracted to this man and was wondering how I should approach this subject to him. You see, I've had a few heartbreaks (haven't we all) and I'm a bit scared of rejection. I'm not exactly how interested he is. Do you understand?
CIC: I do understand and I feel that most of us with a heart have been in your shoes. Since you are getting into the "thirty-something" age group, you may find that its far more important to live long enough to regret only the things we didn't do. Rejection has far less an impact than knowing the success of trying.
I know that this guy is like any other guy except that he's in a wheelchair. That fact does not bother me at all; however, I have never dated anyone in a wheelchair before so I'm not exactly an expert. I also feel that I might not be "good" enough for him. He's attractive, intelligent and a businessman. I'm a single mother who wonders some days why I work because I feel like I have nothing to show for it. I'm not a pessimist in any way but I do get depressed with life's curves. (Don't we all?)
CIC: Life does take its own course at times but we are still in the drivers seat. Sadness, loneliness and confusion are realities of life. The most important aspect of who we are and how we survive is in the way we choose to stay, sad or lonely or confused. We also choose to stay happy. A thought provoking question: Does someone really make us happy or do we allow ourselves to be happy? I lean toward the latter. On a lousy day a great thing can happen and it can go unappreciated. But which do you choose to remember at the end of the day? Or which seems to have the longer lasting impact, the lousy things or the great thing?
Anyway, I was wondering how I should approach certain subjects and questions with this man. I don't want to hurt his feelings or cause him to dislike me in any way, but to me communication is important. I want to feel like I can communicate with someone that I date. I know that you probably can answer these questions because you have had to deal with certain issues. I'm seeking your expert advice...
CIC: You seem very adept in your ability to express your thoughts. If you feel he is also capable, I recommend a quiet dinner where you can talk uninterrupted. Or at least set the mood for a good exchange of ideas, feelings and how you see the other person playing a role in your life. Since you are a single Mom, there are other complications with private time and I do understand this. But nothing is impossible. He may be very comfortable with kids and welcome that in his life as long as you are part of the package. Approaching the things you really want to know can be hard to do but there are many ways to get the ball rolling. He may be very interested in your responses as well and have the same confusion, interests and curiosities as you and equally as concerned about stepping on toes. One way is to hit the nail on the head. Pull out your list and run em' through. Suitable? Maybe. But effective? Maybe not. One way that I think is subtitle and yet covers many of the long term concerns about dating is looking through a book on the subject together. Not everyone is comfortable with this but its a novel approach. Do your reading first and know where the thought inspiring sections are in the book first and lead him to it. And ask, What do you think about what this writer has to say? You may learn a lot about the person and yourself. Again, this is only one way. You appear to be a good communicator. The only thing you have to loose now is time. The longer you take to address it, the harder it is to get the momentum going. Patience may be a virtue, but reluctance is truly a loss.
Confused, Interested and Curious.
CIC: Please stay in touch and let me know how it goes!
I recently started dated a man who was paralysed from "the nips down" when he was fifteen. He has been so wonderful to entertain my every question, but I feel invasive about some of them. So I'll ask you. :) A total stranger so that I can't ask the wrong thing. I do know that he "cath's" himself and empies it four times a day, but does that mean he has to sleep with it? How does he crap? When the time comes for us to be intimate, will he have to take the catheter out? How will I know what he can and can't feel? How do you feel about women opening doors for you?
I guess that turned into more then one question. Thank you for your time.
Thanks for writing. OK. I had to laugh. Not at your curiosity, but in the context it was written. I love it! Now. Getting past the giggles, there are several different ways for people to manage their bodily functions. One of course is simply natures way. But a spinal injury most often changes that so here we go. The bladder: if he caths four times a day, I would guess that he does not have an internal or indwelling catheter. Meaning, he puts it in and empties then takes it out. So he wouldn't necessarily wear or have something on or in him regardless of the time of day. Being intimate should not be hampered by whatever method he uses for emptying the bladder. If you want to go there with him, then make it happen. You may find that its well worth it.
The crap thing is also a fairly normal process. But it has to be managed too just like the bladder. Some people use suppositories, some use enemas, some just sweat it out and some go get it and pull it out. I would guess that might raise an eyebrow. Its called digital stimulation. Put on a rubber clove and stimulate the rectum and it can cause a movement. Not having one or having an unplanned bowl movement can make life rough! But its just a thing. No big deal.
Women who open doors are pretty thoughtful. But if you're referring to you holding doors for him, that's fine. But be sure to let him hold a door for you. Let him be a gentleman for you as you might expect from any man. It might be awkward at times for him to do things for you but if he tries, don't step in until he asks. He'll feel better about himself and you'll know he's thinking of your needs as well.
How will you know what he can/can't feel? Do you have a feather duster? How about baby oil or maybe some whipped cream? Its a simple but honest question. Simple answer. Touch him. Kiss him or what ever and ask. But remember, the mind can be a powerful thing. Watching someone touch you can be as stimulating as the feel.
Good luck Katie!
I thought I would drop you a line and ask a few silly questions...and they ARE silly, lol. First, I suppose I could introduce myself. My name is Cindy. I am a case manager for New Hope Home Care. Our clients are all on vents and live in a residence together. Ventilator-dependent clients have more nurse and pca hours for care, but spinal cord injured clients have maybe 14 hours a day at first. Here is the question........Do you know how to find the cute monkeys that help people with quadriplegia? The Director of Nursing is making fun of me.....but I know I saw a show on PBS about it.
(Everytime I have talked to her on the phone today, she has asked me to take a drug test, lol) I thought maybe you would have some sort of idea, about the monkeys (NOT the drug testing). I AM serious about this, ok? I hope to hear from you soon. Thanks alot!
Thanks for your note and your question. No its not a silly question but I'm not sure if the program has taken off.
I have seen articles and even a program on the assistance monkeys. Since they require a good bit of up-keep, it was probably not a good trade-off. Tell the director that they were a real deal and not really a bad idea as silly as it sounds. I personally would rather have a midget helper. It makes more sense than a monkey!
Hi Mark......hmmm, midgets...now there is an idea, lol. I am not sure if you have a great or morbid sense of humor. I never even thought about the upkeep of the monkeys.....just thought it was cute because I like monkeys and wanted one as a child. Probably not a good reason to get one, ya think? I found your site by looking up quadriplegia on aol......it brought up: Life, Quadriplegia and a Wacky World. I can really appreciate your sense of humor. I printed out a copy for work......I hope that is ok.......it probably has something on the bottom about making copies and now I will be fined thousands of dollars, lol. If it does please tell me, ok? lol Just wanted to ask...Do you know any people with quadriplegia that are on vents.....I mean other than Christopher Reeve, lol. In real life, I want to take our client's out camping or out-of-state and wondering if legal issues would arise? How into legal issues are you? Our vent residence is rather new......home care has only some rules and lots of gray area. I would love to hear from you again. Have a great day/night and be good!!! lol
The jury is still out on my sense of humor and that's about as close as I get to the legal system as well. But each person has a right to decide what's best for them as long as its legal. I really don't know any vent dependant people so I'm at a loss for advice. You could always take them on a virtual camping trip with a simulator. Just bring a bag of mosquitoes, stale Doritos, freaky bird noises and a bunch of sticks and rocks to roll over and WhaLa...! You're camping!
Actually, I do love the outdoors. (Except for the mosquitoes)
All royalties and copyright equity can be addressed to the Dahli Lama in care of me, Mark. He has started a care program for retired service monkeys and a strange chain of interdependency has occurred. It seems that the monkeys needed someone to take care of them while they serviced people who were unable to climb trees. So the monkeys upon retirement received a squirrel. Then the squirrels needed a manicure service to help maintain the grueling hardship due to the constant up and down's. The whole thing now requires funding to support nuts thanks to the monkeys!
Sounds like our political world..... Nuff said about politics. One more commercial, just one more flippin' political commercial and I'll be forced to start writing about things that actually make sense!
Take care and I hope to hear from you again,
Bhaye fo' naow,
I read your article on Sexuality and Spinal Cord Injury and it was so informative and honest that I had to write and thank you. You see, in the early 90's, my daughter's father was injured in an accident and paralyzed from the neck down with limited use of his hand. The thing is, I still love this man but he has chosen to cut me (and his daughter) out of his life. If the choice were mine, I would still be with him today. He doesn't know this because it has become so difficult to express my feelings without appearing intrusive or nosey. So, our relationship has been painfully reduced to the occasional phone call. He's built such a wall around himself, that my fear of rejection overwhelms me should I even approach the subject.
isn't as young as you (he'll be 52 in June). Life is short and he has cut most of his
friends and family out of his life as well. It hurts to know he is so isolated.
So again, I want to thank you for your uplifting and realistic portrayal of your own
experience. It's helped me realize that life does go on for those with SCI. That is what I
wish for this man whether it is with me or with someone else. His happiness is
important to me; perhaps there is some hope for his personal happiness.
Thank you for your message. I hope that both of you find the happiness you deserve. For that matter, I hope we all find the kind of love that makes us feel content and capable regardless of the physical boundaries. I am still hoping that someday I'll meet that special someone and take life on together. I've been very fortunate to have done so many things in my life after my injury that I find it hard to understand why people choose to stay walled up in a private world.
It sounds like you have the strength and love of your daughter to accomplish anything you set out to do.
I wish you the very best.
I want you to
know that I really appreciated your article. I met and fell in love with a wonderful man
who had a diving accident 19 years ago. I already know I want to spend the rest of my life
with him. Sex had been a big issue with me until I met Lester. Never have I felt as loved
and sexy as I do with him. The mental connection is so strong that we can be on opposite
sides of the room and know what the other one is thinking and feeling. Again thanks for
sharing your article.
Thank you for your message.
I think we all pray for the kind of relationship that you've described. I wish the very best for you and Lester.
I was looking through your website and came upon the "personal stories and experiences" section. I'm told I have a fab sense of humor (if not a little odd) and am one of the people that just gets so tickled about things because I "get a visual" of the situation and things just get funnier. While reading the experiences section I got to the story of you and Dave and when he fell forward from his chair and regained his composure with a pizza stuck to his chest, looking at you like you took it. I laughed 'til I cried.
Just so you don't think I am some weirdo---only because you don't have enough evidence, yet. I am a 31 year-old married mom of 2 who is currently taking my core curriculum classes so I can work towards a physical therapy degree. Yep, one more up and coming physical terrorist~~~brace yourselves.
are welcome to write me back,
Thank you for writing. I would guess that my humor is a little odd as well but it makes things far more interesting.
I wish you well in your pursuit of physical terrorism. A much needed evil! Besides, all of the PT's that I've ever met had a great sense of humor and were pretty dedicated to the patients success. (sick humor in this arena helps)
What prompted you to pursue a career in PT after 2 children, a husband and a few years out of school? (the first two being the bigger hurdles:-)
From one weirdo to another,
Have a nice night.
Hi...I just read your story about dating and finding someone. I just started dating this guy in a chair. I had the hugest crush on him before his accident, but I was attached. I never heard he was in the hospital for 6 months or anything. But, anyhow...we started talking again and I hang out with him everyday. I love spending time with him. He is so wonderful. My family is afraid that I will get emotionally involved, which I am. I am not with him because he is in a wheelchair, I am with him because he is a great person. I loved that you said it's not the chair...it's the person. That is how I feel. I have to admit it is frustrating--all those car transfers and everything, but it's gotten easier. I just wanted to thank you--I feel like someone understands.
I wish you the very best! And yes, those transfers can be a real pain but be thankful for the exercise. It can be the difference between being left behind and really getting out for both of you.
It may sound trite but I do believe that anything is possible and your feelings for him could be the best thing that has ever happened. I hope that your family will see him in the same light as you do. Once they realize that how you feel is more than a "nurturing instinct" and that he does have so much to offer you emotionally, the physical limitations and the chair will not be the focus.
Thank you for your thoughts.
I address you as "Dear Mark" as I feel I have found a friend in you after reading your article on sex and dating. I have longed to find such insight as to what you shared...and am ever so glad to have read your encouraging words.
My name is Anne. I live in North Carolina. I have a dear friend who is a quadriplegic. He lives in Mississippi. In October, we are finally going to be able to meet one another in Augusta! I am so excited, Mark! I love this man dearly as my friend...and am open to becoming his lover. I am aware of his health problems...He has a superpubic catheter, and a colostomy.
I am aware the other senses take over, but needed to read what you wrote in regard to arousal. If I am to be to him what he has need of me being, then I need to be informed...educated...knowledgable of what I need to know. Education is the key to tackling anything, or so I think. Have you any suggestions of where I might turn to for becoming better educated on enjoying sexuality with him. I have lived long enough to realize there is a difference between sexuality and intimacy, but I just want this to work so badly, If our relationship should take on that aspect.
Thank you in advance for any help, advice, whatever you might have to share with me. The greatest aspect I gained from your article was "to look at the person, not the chair." I commend you in your thought.
kindest of thoughts, the warmest of wishes,
Hello! Thank you for your message.
As for advice, everyone is different but I'll offer whatever insight I can. Anne, the best way to learn what works best in an intimate relationship with this guy is to sit down and talk about it. It can be a tough conversation to get started but it will open your eyes and his to each others desires and needs out of a relationship. If he feels for you in the same as you feel for him, things will just work out.
On the down and dirty side, because he has a superpubic catheter it can actually be less troublesome if he can maintain an erection. If you choose to go this way. If he is a complete injury and he has no "real" sensation, this doesn't mean that he can't use his mind to sense what is happening. Imagine someone you care about floating their lips just a fraction above your naked body moving all about you from head to toe and it can be pretty stimulating even though touch was never involved. This may not be any different for him except that you may actually kissing him or touching him. Its all perception. He may get more out of pleasing you orally. This is a way for him to "feel" you as you are aroused. I see it as a win win deal!
But before you plan to cross that line, make sure that you are ready to stick around for a while and both of you are comfortable with it. He may or may not be very open right away due to the health issues. These things you learn over time. Don't try to learn too much too fast. But explore at a comfortable pace.
I just finished reading every article on your website. I found your website very enlightening, honest, and funny. I want to let you know how much I enjoyed reading it and to thank you for sharing the information with others.
I do not have a SCI; however, I just started dating a man who has been a quadriplegic for the past 18 years. I find that he is the most positive and alive person I have ever known. I am sure part of it is just his nature; however, a great portion is due to the fact that he is not letting his injury get him down. He can do just about anything, at least he will try!
I must say the part of your website that really touched me was when you said something to the effect that the best thing that you can do is to relate to someone as the person they are and get past the fact that they are in the chair. I agree wholeheartedly, the moment I met him, I saw HIM--not his chair!
I think we both feel that we were meant for each other and eventually we will get married. (We have only been dating for the past three months!) I have been married once and he has been close twice. I think we are good for each other. I feel blessed to have him in my life.
Thank you again for sharing your life and stories with the world. This information has given me more insight to the things he is going through. Fortunately, we have excellent communication, I can ask him anything and he will answer anything. It's just nice to read another person's perspective.
Well...I will quit rambling. Thank you.
I truly enjoy hearing how many people have a great relationships going with someone whose had a spinal injury. Your caring and kindness shines through in your words. I wish you both the very best. Let me know if you set a date!
Update: A date was set! I wish you both the very best of happiness.
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