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It has been some time since I have up-dated the information on this site. Life has kept me pretty busy as it should and I have been drawn away from building web content temporarily. I have continued to reply and write to those that contact me with a question or to share a story. Thank you for your inspiration!
Thank you for having a great website sharing your experiences, you are an inspiration!
I am interested in making my home more accessible and want to install a residential elevator. The house sits high above the ground and a ramp is not practical. I have tried researching on the internet but am afraid some of the "residential elevators" out there look sort of flimsy and small. Can you tell me which elevator you used and how you like it? Did it require digging a deep "elevator pit" or does it rest on the garage slab? Also is it noisy?
Not really worried about space, I have a 7'x7' room directly over the garage that should work.
Thank you for your thoughtfulness.
I researched elevators to death and I didn’t like a lot of the “requirements” for any of them. From elevator pits to safety lock-out switches to institutionalized feel to exaggerated costs, I dropped the idea of buying an elevator and made one. It was actually much easier than you might think. BUT! I had to take ownership of the design and accept that building your own comes with risk and responsibility. If it fails for any reason and injury occurs, there is no one else to fault for it.
Okay. That being said, a very safe and secure personal lift system can be put into place for less than $5,000. If you go through your local Home Depot or Lowes home improvement stores, you will see what is called an order picker. An order picker is used by the employees to reach items on the 2nd and 3rd tiers of shelving that are up to around 20 – 30 feet in height. I used a system from this company http://www.cotterman.com/main/ns/26/doc/6 and fabricated a platform for a wheelchair. The lift was installed with support braces to firm-up the system and I enjoy it because its all open and does not have a cage. I good electrician can install call switches at floor stops so you can control the platform from any level and/or while you’re on the platform.
This has worked great as a personal lift for my situation but I do not recommend this approach if others may be using the lift. You own the risk should someone else do something inappropriate and get hurt. There are a number of elevator systems that claim to be easy to use and safe. Depending on your situation and the intended use of the elevator, I feel that its very important to get client referrals and request to see and try an installed system without the sales professional at your side prior to buying one.
My cousin was injured 1 month ago in a car accident. He is 24 and has C5-6 spinal cord injury. I have been looking for information so I can understand what he is going through. Your website is great! I hope to tell him about it at some point.
I appreciate your note. Share your strength, compassion and understanding with your cousin but take it day by day. Sometimes the best lessons we learn are the ones we figure out for ourselves.
wish you and your cousin the very best.
I appreciate your thoughtfulness. It sounds like you’re on the home stretch and career bound… if you make it through Dr. Jenny’s class! I have a lot of respect for Jenny. She is a pretty amazing person. And I would guess that you are as well! Thank you for the kindness and smiles!
luck this semester.
Just stumbled onto your site and had to drop you a note to let you know how much I enjoyed your stories. My sister, Carrie, is a quad. Actually, I was Googling to see if I could find some info to help her. Lately she's been having problems with blood pressure, heart palpations, etc.
Anyway, your stories were hilarious. I hope you continue to maintain the site. I'm sure anyone who suddenly finds themselves in the world of paralysis will appreciate your candor and humor. I remember a funny story that happened when I was shopping with Carrie. We were in an appliance store. Another customer was accompanied by a young girl. The girl couldn't keep her eyes off Carrie and especially her wheelchair. Finally, her curiosity got the best of her. Pointing to Carrie, the girl said to her mother, ?How come she's in that wheelbarrow??
Carrie's case is similar to yours. She was 19 when she was injured in 1982. You guys never cease to amaze me. Keep up the good work!
This is what happens when you start Googling. You think that it’s a one time thing and then the next thing you know... you're Googling all day! You just can't help it. Morning, afternoon and all night seems to fly by when you're into it. And you end up in places that you never dreamed of being.
I really do enjoy stories like the one that you shared. Voices of innocence can shed light on the most humorous and painfully obvious aspects of life. To laugh with that kind of insight is life with no predisposition. It is what it is. And at times, it is... pretty damn funny.
I hope that Carrie is able to find out what is causing her discomfort. From what you've described, it sounds like her body's natural alarm system responding to a stimulus below the level of injury.
Take care and thanks for Googling to my place.
I want to thank you for the time you have put into your website to help others, both able-bodied and disabled, understand that SCI is a physical situation, and the person in the chair is essentially the same as the person who stood however long ago. I was discharged from a rehabilitation centre a week ago tomorrow, having sustained, as you can relate to, a life-changing injury. For me, a 13 year career in law enforcement was ended in essentially a second. I fortunately have friends, a fiancé, and a 6 year old son who have been great, but when the day is over, I still feel surrounded by those who try their best to understand, but can only relate distantly. Even though I have only read your work, I feel as though I know you, and if we were to ever meet, you are one of the few who could laugh with me as I relate the story of one graceless fall after another, instead of give me a look of pain and pity.
Now that I have gotten your attention and made myself seem like another hopeless internet crazy, I might as well get around to telling you the actual topic of this increasingly long-winded letter. I figured you might get a kick out of another “innocence of youth” story. While I was out on one of my first day passes from the rehab centre, and doing some shopping, I spotted a tiny little girl looking at me curiously. When I passed her, she piped up and asked “why are you in a stroller?” Her father was horrified, and frankly, I would have been more upset at his reaction if I did not find her question so darn cute. I asked her if she could remember before she walked that her mom and dad pushed her around in a stroller, and she said she did. I then explained that I hurt my back and my legs forgot how to walk, so I pushed myself around in this thing that was called a wheelchair. She seemed satisfied with that, but said “You should get someone to push you, then, you can have a nap”. Never were words so true.
this brings you a smile - it sure helps me remember that it ain’t all
bad. Take care, thanks again, and I hope all your landings are soft
Out of the mouth of babes… What a great experience! I appreciate your sharing that story. Although I had neglected writing much lately, the stories and unique situations seem to ebb and flow with the wind where one moment in time several crazy things happen at once and then things plateau for a while. I get together with an old college buddy on occasion and we get a chance to crack-up at all the glory days. The great thing is that even though the glory days are a fiction of time, imagination and conversation about the past, we're still creating our own future. Granted the stories today may not contain as much excess as the earlier chapters. Voices like the little girl that you happened upon will remain a simple grounding of innocence. It’s a Readers Digest story in the making. Submit it!
Thanks again for sharing. Have a Happy New Year and keep in touch!
Great job on the site, congrats on all the success in your life post injury. I too have moved on with my life and proud to say I live independently, drive, work, etc. We have many experiences in common although you have been in the game about 10 years longer than me. I crashed a snowmobile in Jan of '97 at the age of 19, resulting in c5/c6 quadreplegia. I loved toys then and I still do now. I'm familiar with the Honda Pilot, and I've often considered looking for one. I'm also familiar with how limited yours and my hand function is. Just wondering what you did about gas/ brake controls in your buggy?
The Pilot works great! I’ve been remodeling and working on several other projects that unfortunately has taken away from screaming through the trails. Although, I’m looking forward to a summer with a little more play in it this year. Since the Pilot comes stock with all hand operated controls, it was an easy adjustment. The only adaptation that I would consider different than standard is the brake assistance.
The brake levers are positioned directly behind the steering control. I used good nylon coated straps and looped them through the steering control and attached them individually to the brake levers. (One to the front brake and the other to the back brake.) When my hands are positioned for steering, the nylon loops rest around my wrists. When I need to apply brake pressure, I simply pull back on the loop and it pulls on the brake. There are some challenges. Sometimes I do need to release from steering to apply the brake. Its all in how you drive. Besides, brakes are only for stopping for more fuel right?
I don't handle the cold very well. In fact, being cold sucks. But if you were/are a snowmobile junkie, the Pilot is a blast in snow. It's being in a micro sprint car on a loose dirt track. I hit the field and slid into a power bank turn that kept me looking over my shoulder for forward progress. Long sweeping turns at 55 mph kicked out sideways sends a little rush through your veins.
Let me know how you make out with the Pilot.
Take care and have
a Happy New Year!
Mark, I am the mother of five sons...and I am not quite sure how I came upon your website...but...having found it...began to read and read and read and ummm...read...
You write so well....I hope some day you decide to write books...Your humor is wonderful and warm.....You have a deep inside read on the makeup of being.....but This letter is really not for you!! It is for your parents...and this is what I want to say to them:
Dearest Mark's Parents:
What a wonderful wonderful son you have!!! Obviously, he has been well loved in his lifetime. I hope both of you can sit back and enjoy the fruits of your labor....What a joy he must be to both of you! I can only imagine how hard it must have been for you to let go and watch Mark as he moved so far from you. So often as my sons were growing, I would wish them into the palms of God, knowing I could not protect them or keep them safe. It is hard for a parent to realize that the will of His may not be ours..and we cannot keep them at our breasts. It was hard for me as each of mine left for college. I had reasons to worry about two of them...but it was not if they would be able to access the college...It was more...would they go to classes!!!
I tip my hat to both of you....You have what so many parents wish. A son deteremined, hard working, loving, self disciplined, kind, and filled with love. I wish peace to you and share joy in your appreciation of Mark.
My reply may seem a little late but sincere non-the-less. You have one of the remarkable gifts of making someone feel special. Not only have you made my day, but I will share your note with my mother. My father passed away several years ago but I’m sure that your thoughtfulness has not gone unnoticed. There are times when the words just seem to create the page and others where no matter how much sentiment is poured into a sentence there is no reply that matches the words that you’ve shared. The best that I have to offer is my thanks for the smile that you gave my mother and I.
Do you get marriage proposals over the internet all the time?? After reading all your emails and your response below to me, you are like a dream. There is nothing more attractive than a man who is funny and knows the art of flattery! If I wasn't already married, I would consider getting on a plane to Pa. (lol).
Ok - get your Psychologist hat on! I have a very good friend that I work with and have worked with for a little under 10 years. We have always had like a close brother/sister connection. He came here (CO) without any family as I did (well I have a sister that lives an hour a way, but all the rest of my family is in Tx). So we kind of attached at the hip because we started at the same time. He is such a great guy. Anyway, he is an avid road biker and was riding up Mt. Evans and was hit by a car about 2 years ago. Needless to say he ended up at Craig hospital with what I think is called a T-6 complete injury. It was so tough on him, as you know, his life changed in an instant. He was engaged at the time and six months away from marriage. She hung around for a few months after the injury, but he broke it off more or less to give her an out and she took it (which in the long run was a good thing). I visited him often in the hospital/rehab and tried to help in everyway.
I knew how. His family came and his mom stayed for the better part of the year. He has a great house and he was back at home within a few mths. He returned to work after about a year and since I only work part time, I see him 3 days a week, but we talk more than that. Anyway to say the least he has had serious ups and down times. Recently the news of his ex getting engaged again was so hard on him. He can be such an outgoing funny guy and although I still see him like that occasionally, it is not as often. This guy has so much to offer, but thinks he doesn't. He has gotten into BB and recently into biking (handcycling). He comes over and has dinner with my family probably twice a month and my girls love him. He has everything going for him (Great job, good looks, athletic, funny, crazy etc).
But lately he just seems to be sinking. I have tried to set him up with this girl I know and he refuses to go. I know they would hit it off and I am tempted to have her meet us for lunch one day and not tell him (do you think that would be wrong?). He says he doesn't want to be a novelty that wears off (whatever?). I guess after reading your website and how you just continued living life to it's fullest, it made me want that so badly for him. We have had a lot of deep talks and I probably know more about him than I should. I tried to help him through the hospital/rehab stuff where he felt he lost every ounce of digity/modesty he had. This guy is 100% self reliant and I know he thinks he will be a burden to some relationship. I hate it and I literally want to slap him into reality sometimes.
I guess I wanted to know if you went through this? Is it normal. I love this guy (like my brother) and he deserves happiness and love. I constantly give him hugs, etc to let him know he is lovable. I know if he would give it a chance it would happen. How do I help him, without letting him feel sorry for himself. He won't take risk/chances on himself anymore. Sorry for the long over the top email, but I am worried about him. He is like family to my family and I don't want him to be so down. Thanks for listening. I am terrible at writing long notes. Be glad I don't have your number so atleast you don't have to listen to my babble. Take care and thanks for being you.
Thank you for having and using such a big heart.
I'm a little short on proposals here lately but if I collect enough sarcasm it eventually sounds like a proposition. Huh... Long story. Okay. Enough of the silliness and down to business. My psych hat is on. Oops... its on backwards.
I'm going to try and hit a few points head on and others may sound a bit aloof but you'll know what to do. When your friend refers to "being a novelty", understand that he has a very valid point. You have an insight of him that most people would not have so you may feel that this statement seems harsh. Getting to know him might be fascinating for some ladies. The reality or conclusion or end result is things are really not that much different... granted, there are some of the everyday lifestyle stuff that goes along with paralysis that can be a drag. In my opinion, it's no different than thinking that someone is pretty cool because they have a nice house or car or that they are special because they project a certain image.
Wheelchair life can be much the same. Some people may conclude that this person has gone through something traumatic and may be well equipped to adjust or they must be bitter or they must be very in tune with emotion and be able to understand others needs or they must be very lonely. There may be nothing further from the truth. The impression of "being a novelty" can be felt because others may project that you are something or someone that you're not.
With that being said, someone who is genuine will help your friend see that he can be much more than a novelty. I do feel that the harder part of a life altering situation like T6 paralysis or any level of significant life change can trigger stronger moods of helplessness. This is where the reality sets in that this is "who I am" and "what I have to deal with." You are an incredible friend to care so much. Almost crush like.... hummmm?
Self reliance and confidence manifests itself much more readily in those that experience enough small problems and overcome them with enough small successes. I would guess that your friend already knows this. His interest in love and companionship right now may not be as strong as your desire for him to have love and companionship. Find the right balance. Help to put him in a position where he can feel good about himself, meet new people and be in control of his life on his terms. If he happens to be someplace and possibly meet someone that you might think that he'll enjoy being around, so be it... Just stay true.
Hi, my name is Mickey and I'm a registered nurse. I came acrossed your website while researching quadriplegia. I have been a nurse for over 30 years and your explanation about the nurse in ICU was warm and caring. The advice you were given was good, we all face them daily, either emotionally, socially, physically or mentally. Your stories were so true, people sometimes just don't know how to handle certain situations. Children are so innocent and loving, they are little angels in my book. You are an inspiration. In my care for patients that are disabled, I will definitely refer them to your site, if you don't mind? Thank you so much for sharing.
Thank you for your note. I certainly don't mind if you refer my site. Nurses, as you may have gathered from some of my writings, have a special place in my heart. I can now add one more.
I've been sick in bed for two days with stomach flu. I haven't been able to sleep or keep food down, and when I'm not lying here in misery I'm running to the bathroom to vomit or worse. My only source of entertainment has been my laptop, and I can say quite honestly that I have no idea how your website ended up on my screen. Perhaps at Google I mistakenly typed "C6" instead of "size 36C". Hah!
I started reading your site, and I was quickly drawn in to the warmth and intensely human nature of your writing--expressing so much optimism and zest for growth and learning. You have a way of expressing yourself that very clearly portrays a "real" person, complete with ambitions, disappointments, sadness, joy, and, above all, vulnerability. It was thrilling to read your stories, and quite a delight to see your sense of humor at work. I'm not going to say something silly like, "Being sick for the past two days has given me insight on to how you must have felt after your injury." But I will say with sincerity that during the time I was reading your website, I forgot how sick I felt. The circumstances of your life have lead you to find an inner strength that is so rarely seen, and is so needed in this world. I'll check in at your site from time to time to see how you are doing, and to remind myself that people with real guts and integrity exist and thrive.
My girlfriend insists that everything in life happens for a reason. I'm not totally convinced of that, but if it's true, then I got stomach flu so I could find your website.
I wish you every happiness.
I hope that you're feeling better. It sounds like you have it bad! But... at least you now know where you made the mistake in finding my site. C6...? 36C...? I suggest that you focus, try again and let me know what you find. One has to be better than the other! Or is that two is better than one? Hmmmm.....
Thank you for your thoughts. I very much appreciate your taking time away from the bathroom, bodily fluids and all of those other unmentionable functions. Maybe your lady friend was right about things in life happening for a reason. If I were in your shoes, I'd want a good distraction from the flu bug too. I'm glad that I could be there for you and I do hope that you're feeling better. Now... about that size 36C?
Wishing you health and rest,
This is a copy of a letter I originally emailed on 11/21/03. From your comment on 12/19/03 and the fact that I never received the automatic return receipt, I gather those emails are inaccessible. Since I put a fair amount of effort into writing the letter and I hoped that you might enjoy reading it, I figured I would try emailing it again to your new address. If you have already processed the original, I apologize for cluttering your inbox with a second copy. Best wishes to you and yours in the new year.
I stumbled across your website while wandering the web one evening looking for a simple diagram of a plane. I'm still looking for the diagram, but I returned again and again to your website until I had made my way through every last comment. I found it troubling that some people would be released from the security of the hospital environment into the strange new world of SCI without so much as a map and a phrase book. For all those that will find answers through guides like you, how many others will remain isolated and lost.
Your course work in Communications and Business has served you well as a writer. Besides technical proficiency, a rarity these days, you write with an engaging and personal style. What really knocks me out is a book that, when you're all done reading it, you wish the author that wrote it was a terrific friend of yours.-J.D. Salinger The candor with which you convey your foibles, triumphs and dreams gave me an awareness of life with SCI that I lacked before, and I am all the richer for it. I felt it only proper that I attempt to reciprocate. Since I have a degree in Neuroscience and not English I hope you will forgive my imperfections as a writer. Although intimidating in length, it takes about eleven minutes to read, which is a small fraction of the time it took to write. Consider this my version of the stewardess kiss.
As a child growing up in NYC I learned to love the diversity of people I encountered in a big city environment. I remember how fascinating it was to discover that no matter how different people were in how they looked and lived, there were always common threads to be found. After college I moved to suburban upstate NY, where the sprawl and relatively generic population left me longing for the variety I had grown accustomed to in childhood. I went from a meadow of wildflowers replete with all the color and complexity imaginable, to a polar ice cap where except for the occasional polar bear all I saw was snow and ice. The subtle variety between snowflakes requires a microscope to appreciate.
My mother taught me, by the example she herself set, a lesson she in turn had learned from her mother: treat every stranger as a friend. This incredibly simple lesson has served me very well so far. With it I have made treasured friends across all lines of demarcation such as race, religion, ability and age. In addition, many potentially ugly encounters have been avoided. One of my favorite examples occurred when I was about fifteen. A friend and I were out in broad daylight waiting to cross the street when a tall, thin man, who was obviously frayed around the edges, walked up next to me and said, quite proudly, I just got out of Belleview. Now if you're not familiar with it, Belleview is a notorious mental hospital in NYC. My friend instantly suggested that we cross the street in a different (i.e. wrong) direction and tugged frantically at my arm (a traditional defensive maneuver in NYC). Since he had clearly addressed me and addressed me pleasantly, I smiled and congratulated him. He looked down at me for a moment and said, you have a real nice smile. I thanked him just as we got the walk signal. Have a great day now, he said and I wished him the same. My friend held me back as his long legs carried him quickly across the street with the rest of the crowd. She glared at me with bug eyes and a gaping mouth and asked if I was insane or just lucky. I assumed it was a rhetorical question and held my tongue. A few minutes later we saw him again down in the subway station a couple of platforms away cursing and gesturing wildly at passengers who either studiously ignored him or fervently sought escape routes.
Despite obvious distinctions, human beings share 99.9% of their genetic makeup. All the diversity in appearance, health, intellect and personality arises from the 0.1% that remains. Interestingly enough 85% of the difference between individuals occurs within a given population (i.e. Asian, African or European) and only 15% of the difference occurs between populations. In other words we may be molecularly much more like someone that looks nothing like us than we are like someone apparently similar. Unfortunately, one of the 99.9% of the genes we usually have in common encourages us to fear that which is different, the definition of which is determined by what we are exposed to in childhood. That trait which conveyed an advantage in the past proves troublesome today. Some people naturally look past differences, others have learned to do so, and yet some people find it challenging to look past even the subtlest superficial differences.
Upon careful reflection, we can often find something in our own experience useful in connecting ourselves to others who appear dissimilar---bridging the gap even if ever so tenuously. Frequently the respective situations differ by several orders of magnitude. I know God will not give me anything I can't handle. I just wish he didn't trust me so much. Mother Teresa Even the most trifling deviation from the norm can have surprisingly far-reaching consequences. For example, at 5'1" I am in the fifth percentile for height, a mere four inches smaller than the average woman. Although noticeably petite, I am still within the normal range. My height, however, has ruled out certain career choices. Ill never be a prima ballerina, play in the WNBA or fly ejection-seat aircraft. Admittedly, however, only the last limitation has ever caused me any concern. On a more practical level, the world seems to be designed for someone about 58. As a result, shelves are too high, pants are too long and crowds frequently turn into mosh pits. Over the years I have learned to compensate. As a child I would jump onto the counters to retrieve whatever I wanted from the cabinet. As an adult I still occasionally take a leap when no one is looking, but I've given in to having a stool on all three floors of my house and an inside and outside "grabber" (BIG tongs). I bought a sewing machine so I would never have to wear my pants rolled up. In crowds I find a "big fish" going my way and stay in his/her wake. I've even gotten brave enough to ask a tall stranger in the grocery store for help reaching the item I need (the more desperately I need the item, the higher the shelf and the pile they've stacked it in). Strangely enough I'm almost as nervous about asking one person for help as I ever was performing in front of hundreds. No one likes to ask for help. "Our strength is often composed of the weakness we're damned if we're going to show.-Mignon McLaughlin Sometimes we work so hard to compensate for our own peculiarities that we forget everyone has them. I remember how surprised I was to learn as a teenager how self-conscious one of my friends was about being too tall. Before that, I had never even realized there was such a thing as "too tall."
The danger arises when one assumes one knows exactly how someone else feels, what they are capable of, or how they will behave. Even for two people in identical situations this is impossible. I have never been so frustrated and angry as when I have been prevented from doing something that was well within my capabilities. The most painful state of being is remembering the future. Especially the one you can never have. Soren Kierkegaard Even worse, when never given the opportunity to prove oneself, the error in the generalization will not have been corrected and others will fall prey to the same assumption. For example, I have always looked young for my age. This fact combined with the general observation that I am "cute, sweet and lighthearted" somehow automatically precludes intelligence and tenacity. If they bother to look at it, there is enough documentation of my intelligence, but the subtler trait of tenacity often goes unnoticed. They have no idea that my lightheartedness comes from resilience and a positive attitude instead of a perfect life unchallenged by adversity. Since I can't do too much about the way I look, maybe I should smile less, laugh more softly and act a little meaner?!
As for the subject of the "meet market" (spelling intended), of course soul mates turn up in the traditional social settings of work, school, bars and parties--perhaps due to sheer numbers of possibilities if nothing else, but they also have been known to arise from completely unexpected situations. One must always be alert for a certain synchronicity and take the leap of faith. I have to laugh when I hear at school reunions "I had a crush on you, but I could never get up the guts to ask you out from someone I would have, more often than not, gone out with. Strangely enough, that comment always seems to come from the guys you would have never guessed would have difficulty with that sort of thing.
Another problem that arises in the pursuit of a partner is that you must find someone with comparable assets to those that you bring. Someone who brings with them many desirable characteristics: sense of humor, attractiveness, intelligence, kindness, contentment, and success for example will have almost as hard a time finding a suitable partner as someone that has too little to offer. Unless your three dimensional persona drastically differs from your two dimensional persona, you have plenty to offer on all counts. One of the greatest gifts you can give is in the way you live your life. Franklins illness proved to be a blessing in disguise, for it gave him strength and courage he had not before.- Eleanor Roosevelt You might just be having trouble finding someone that can keep up with you. Take it from someone that has jumped off more than her share of cornices and tried everything from whitewater rafting to rock climbing, you definitely fall into the category of active and adventurous!
Finally, on a more serious note, in your 6/10/01 response to Erica's comment you said, In my prayer, I pray for God's strength to handle [the] challenges I face with dignity. Now dignity is one of those funny English words that not only has many official definitions, but a few colloquial ones as well so Ill do a little editorializing.
1.) the quality or state of being worthy , honored or esteemed,
2.) decorous, elegant deportment,
3.) a person of high rank or title.
1.) has proven himself worthy of respect not only by living independently, but by positively contributing to the lives of others. He has earned professional esteem by achieving success. Therefore, he is honored by friends, family, associates and strangers alike for his character and the achievements it has brought him.
2.) has proven, even after being decanted onto the floor of an aisle in Wal-Mart, that dignity is not lost in that you have fallen, but gained in how you rise.
3.).... Well, I dont know if any of those dancing skeletons in your closet has ever worn a crown or a mayor's sash.
Congratulations on your beautiful dream house. What a stunning view! With a little imagination and the right headwind you can spread your arms-wings and take flight right from the edge of your deck. Given that your website has gone untouched for several months, you must be terribly busy with the finishing touches. Although a response would be welcomed, you could always just send me a grade on form and content since this has turned into more of a dissertation than I expected (you're lucky I left out the footnotes). As strange as that request would seem, I would then know that my efforts had reached the intended recipient, and how they were received. Oh the comfort of feeling safe with a person; having neither to weigh thoughts nor to measure words but to pour them all out, just as it is, chaff and grain together, knowing that a faithful hand will take and sift them, keeping what is worth keeping, and then, with the breath of kindness, blow the rest away.-George Eliot I leave it to you to do with this as you will with only one exception. I am attaching pictures to illustrate certain points made and to afford you the same opportunity of viewing the writer as you extended to your readers on your website. I ask that if you chose to include any of what I have written in your website you exclude my pictures. Be forewarned, despite my every effort, the pictures show up at the bottom of the page instead of behaving themselves and sitting in the corner as all good attachments should.
I wish you joy.
Stunned, intrigued, enamored, honored and downright grateful. Thank you for your perseverance in sharing your message. I dont recall this gift being scribed on my note to Santa? But yet here it is. Cloaked in lifes little miracles wrapped in arms of love and compassion complete with the smile. I have had the joy of reading your 11minute dissertation over and over. Its not often that I have so many of my interests piqued by a writer gifted with the fine art of kissing strangers. You have touched on planes, Mother Theresa, statistics, cultural variation, the country, the city, mental hospitals and one of my favorites irony. Just as piqued can mean indignation, it can also mean pride and arousal. Like life, it is what we make of it.
I want to thank you again for the kindness that youve shared. I do appreciate the energy, effort and time that it must have taken to put so much of your thought into such a complex, enlightening and detailed note. I have been fairly distracted for the last several months with projects ranging from personal to professional to material. I have always said that I gain so much more from the interactions that Ive had both virtual and face-to-face where people can freely inquire, share heartfelt sentiment and express their interest in my situation as an individual who may not appear as most others. It sometimes takes a heart like yours to remind me that my heart is more open and free when sharing with someone like you. I will post your note and refrain from placing your image in my website. Although, I do feel that a smile like yours should be shared.
If you want to be in the game, it is important to study the competition and keep a secret weapon close at hand. Use a strategy that best fits the skills, talents and desires that you bring to the event. Life is not always a game but having a winning attitude certainly helps. Where the hell is he going with this you ask? Your perseverance, tenacity and intelligence may not be the first thing that people grasp when confronted with your petite frame, cute smile, sweet personality and lighthearted approach to life. You have the most valuable tools at your disposal. Dont change a thing. Keep on laughing out loud, smiling all the way and showing your lighthearted good nature. If someone then chooses to try and take advantage of those traits, God help em.
One other thought: Consider adjusting your route through the grocery store to include the isle with brooms and mops first. Find one with a relatively good handle and use it to pull the items of your interest from the highest of shelves. Oh ya one other thing to consider when using this approach, choose plastic containers. Theyre more likely to bounce and less likely to have you using the broom or mop for its more common purpose.
Alice, I look forward to future installments
of The Fine Art of Kissing Strangers.
- As you may have noticed, I have been a bit absent lately. I have updated my site with a
new email address so I should be able to now receive your messages. I want to thank all of
you who have taken the time to write and share your thoughts and comments. Have a healthy,
happy holiday season!
My daddy was paraplegic from a fall out of a tree stand. He was 64. He had 3 different vehicles that he was able to drive, his last one being a Ranchero. He loved that thing. :-) I so wish he could have seen your web site. I have read alot of them and yours is among the best. Unfortunately my daddy's heart gave out. He had a pacemaker, but after blood clots and a serious infection he had a massive heart attack and we lost him. He never gave up on life, even after his injury. He did lots of woodwork and tried just about everything. lol He just thanked God for the years he had and that it wasn't worse. I know I'm just rambling now, but thank you for sharing and for reading a daughters precious memories of her daddy. Your site brought back some pleasant memories for me.
Thank you and God Bless you!
Thank you so much for your note. I must admit that it brought a tear to my eye. I lost my father a few years ago and the memories remain vivid of the times we spent together. It might be fair to say that your father raised a daughter with a lot of compassion. Im sure that you have learned from your father that so much is possible regardless of the challenges you face in life. Let those pleasant memories and passion for life shine in the life you lead.
I wish you the
Im a C5/6 quad. I would like to know how you transfer yourself. Do you have much Triceps control and strength? Do you use a kind of arm cheat? Do you have any hand function? I am really interested in how you went to school on your own with your level of injury. I am 11 years post injury and am still looking for new ways of doing things. It amazes me how many things that I have found that make doing tasks easier. Even when I have done things a certain way for years, I come up with an easier way. My wife and I came across your web site by accident. She started to read about you and could see many similarities with you and me. She repeatedly visits your site for inspiration. It has motivated me again to look for new things that I can try. I like all the stuff that you have included on your site. The Pilot is the coolest. I hope that I can find one that is not too expensive. They are hard to find. I also like the lawnmower. I have a 1993 Ford Econoline E-150 van that I drive from my wheelchair. It is equipped with an EGB (Electric Gas and Brake), Low effort steering, a 4 drop floor and a swing lift. I get a lot of compliments with it. I have tried downhill skiing using a Bi-Ski. I found out that a helmet is a wise idea after I landed on my head 3 times on the first night. Wouldnt you know it that when I got the helmet I never fell again. Isnt that typical. Its a blast. I have done it 10 times and look forward to being closer to Big White In B.C. so I can do it more. I have a Quickie Cyclone bike attachment for my manual chair. It is not as nice as your ride but it is easy to use. I dont have to get out of my chair. It clamps to a tube mounted permanently under my seat. I have a lot of fun with it in the summer. I have an UpperTone weight system. It is great because I can use all the stations without help. It was designed by a C4 quad and works really well. I am looking into getting a jet boat. The nice thing about a jet boat is that they dont need a whole lot of modifications. You can get them with a dropdown ramp in the front. Usually these are used for quad bikes but they work really well with wheelchairs. A couple of tie down points at the drivers spot and I will be able to drive from my chair. I can hardly wait.
wife and I are moving to
Im pretty sure that you have been a great source of inspiration for many people already! Keep moving ahead with all of your positive experiences and continue to do the things that you want to do the best that you can. Not only will you amaze some people but youll be pretty darn surprised at all of the stuff you can do.
As for me, I dont have the use of triceps or hand dexterity. I am a textbook complete C6. I use a manual wheelchair and somehow Ive managed to figure out transfers without the use of boards or other devices. I use mostly shoulders and plant my arms. The best transfers are when seating heights are similar. But its still possible to climb in and out of uneven areas like my car.
College as a quad is not easy but not too complex either. Its really a matter of managing your deficits. And I dont mean moral or educational! You just have to manage time efficiently. Most schools that are wheelchair friendly will also have other assistance programs available. I may not be telling you anything new. Your options are as open as you want them to be.
I plan on being up in Toronto this
weekend. Im hoping to hit the jazz fest and just take the weekend as it comes.
Best wishes on your move and let me know how the boat works for
Well, I started off the evening looking for used Dixon mowers and I ended up at your site. I'm still not too sure about how the transition occurred but nonetheless I have been here for a good part of two hours. Yes, I am an incredibly slow reader. One day I will see if the company I work for will pay for the "Hooked on Phonics" course for me. I will use the argument that I will be more valuable to them, being able to read and all. But then what excuse will I use when I "accidentally" walk into the ladies restroom? I'll cross that bridge when I come to it.
You seem like a truly amazing person. Your story has brought tears to my eyes and at the same time made me laugh. I'm suppose to try to go to bed now in the midst of this emotional turmoil. Thanks for that! On top of it all my lawn will go on looking gapped up because of the hack job my Murray mower does on it.
Your website is
awesome. I'm a better person for having spent time there. Thanks for taking to time
to share your story with everyone.
Thanks Rob! Good luck with the yard. If you have trouble getting funding for the phonics course, possibly you could seek donations while in the ladies room.
I have been going out with a quadriplegic man for 2 years, we have both decided to try for a child, I am a bit confused as he was told by a fertility specialist at his local hospital that his sperm count deterioriates for 2 years after his injury but then it stabilizes, and doesn't drop any more. We were told by this consultant also that we shouldn't have any problems getting pregnant, but I have read on the web that the chances of this happening are quite rare! So I am not quite sure which is correct.
My fiance's injury is at C5/C6, he is a complete injury and has been in a wheelchair for 16 years, does this have any effect on our chances? We are currently using a Ferticare vibrator that causes him to ejaculate which works everytime! The idea being to build up the amount of sperm he produces.
Any help you could give me would be greatly appreciated, though I must say we are having plenty of fun trying!!!!!!
I have read a few studies on male fertility and what the fertility specialist said was close to the generally accepted theory. You will also find commentary and research that supports the quite rare theory. Remember, there are two people involved. (Three or more if youre kinda kinky!) Your physical situation also contributes to the success of contraception.
The good news is that it can be fun trying. The bad news is that it is possible that you may not achieve your desired result. (Pregnancy that is ) Keep trying!
I wish you both
the very best of luck, love and powerful little swimmers!
Just got done reading your website.... found it while I was searching the WWW for little tid bits of information :) I'm currently dating a C-5 C-6 incomplete... been dating for a long time. I was laughing so hard that I was crying. Can't wait for him to come home and read them.. but I better strap him into his chair first! He's had many stories similar to yours. My nephew calls his power chair a "fun chair" and wants to get "a really bad boo boo" when he's older so he can have one. You just have to love the 3 year olds, don't you?
But I just wanted to let you know that your website is awesome. I hope you post more stories as they happen and maybe let others send you silly stories and post them to! (Heck, I had to explain how my boyfriend kicking me wasn't abuse. I was helping him out of bed, his leg spasmed and he kicked me in the shin and kneed me in the stomach in a matter of 30 seconds. Landed up with a bone chip on my shin! Next time he forgets to take his meds, I'm not putting him in bed!)
I wish you luck with everything you do!
Thank you very much for your note. Now you have me laughing. I wish you the very best in everything you do as well.
I just read a few things on your website and I'm hoping you can help me. I've been searching the net for information and haven't had much luck. I am an able bodied 30 year old, and I am currently in a relationship with a 25 year old T3 paraplegic. I love him very much and we have been intimate for about 6 months. He satisfies me sexually better than any able bodied man I've ever been with. I would like very much to be able to return this to him, but he says there is really nothing I can do and that satisfying me is all he needs. He has been paralyzed for 5 years (he was 19 and was shot in the chest) and I'm wondering if there are things we can do that neither he nor I know about. We are very close, and we are open to any suggestions. He feels there really isn't any point in my doing much to him because he can't feel it anyway, and I feel frustrated because I really want to do something. Can his satisfying me really be enough for him? Our relationship isn't just about sex, we are best friends as well. I just want to explore all of our options and maybe we can benefit from other's experiences. He tells me he is happy now, and its not that I'm unhappy, I just love him so much that I want to be able to give him everything. I would appreciate anything you can tell me, books web sites, etc. Thank you so much.
Your relationship sounds wonderful! You mentioned in your note that you are best friends with this gentleman and that intimacy is very satisfying. It seems that your desire to help him feel as you feel is the next step in being closer with him. I can only share from my own experience that what you are feeling is very natural and normal for any relationship regardless of his paraplegia. Although, it does add a twist I feel that intimacy is far more emotional than it is physical. But the physical part is pretty darn nice too! Getting to know techniques, physiology and approach to sex with someone disabled through reading, studying and networking is as research is theory. Combine that new found knowledge with practical experience and you may find that your desires and his are the same. You may find that his ability to be satisfied will grow with the relationship. You may also find that your relatively young relationship has yet to cover all of the bases. You have already overcome the most difficult part of any wonderful healthy relationship. You have found each other and started something special. As you are progressing with theory and experience, you might consider reading some of the articles in www.newmobility.com regarding dating and the disabled. As with my comments and thoughts, others who write and comment on sexual relationships can only offer opinions. Follow your heart. Keep honest talk alive, levity at hand and a creative approach to intimacy kept at every encounter. There is no more incredible of a feeling.
I wish you the
My boyfriend and I were involved in a serious motorcycle accident on March 14th, 2003. He is now paralyzed from the midchest area, remains a patient at a trauma center and is hoping to be transferred shortly to a rehabilitation center. Needless to say, this tragic accident has quickly made changes in our lives. He has gone through numerous surgeries and continues with complications, but we look forward to the day he will come home after several months of rehabilitation. I am amazed by his strength and courage. God has answered prayers in ways we may never understand.
As I read through your site, I am also amazed at your strength and courage. You are a remarkable man who has shared so that others in your situation learn to adapt and believe in the future. Thank you for your wonderful stories of love, laughter and tears. I especially like the story of the little boy who watched and watched you and then said, "I hope your legs get better!" Some children are so very observant and compassionate. Some people are, too! That is the wonderful part of living.... sharing, learning, and loving one another.
I wish you all the best of life. I will continue to watch your site and to read others in hopes of learning more and more so that I can help David and others through these life adventures.We are not familiar with handicapped accessible vehicles, but your van looks like one which would fit our needs. At the present time, we have a motorcycle and motorhome to sell. Once the motorcycle is sold, I can get a loan through my credit union to buy an accessible vehicle. From your description, it seems that this van is accessible for a wheelchair bound person to drive independently. Is this correct? If so, can it also be driven by another person without a disability? Where can this vehicle be seen? Is there anything else you can share with me to help us through this change in our lives?
I do hope that your boyfriend is doing well. Im sure that physically and emotionally he is in the right environment to meet his challenges. I also hope that you are strong and that you dont harbor any guilt for your having been spared significant trauma. This may seem difficult to comprehend, but the situation that your boyfriend is in, is his own. It does not mean that he doesnt have a good support system or that hes alone, I mean that he has his challenges before him to overcome. Allow him to struggle. Allow him to fall and make mistakes. Allow him to drop things and struggle for its return. Seeing him struggle will be very painful and you may be tempted to help too much which can foster some resentment. Grow through this time together by yielding to his demands and focus on the person you were before his injury by helping him find that sense of control he had. You have not indicated any such behavior from either of you. By reaching out, you are showing a sincere interest in doing the best that you can for him. Share your knowledge with him. At times it will be hard and the injury will change the way you think and the way that you look at the world. This time is for both of you to make the most of your lives and take it day by day. Learn to laugh and see the humor in the every-day issues of this new world and you will succeed in ways that you still have yet to imagine.
I do have pictures of my van on my website. And yes, the van is equipped for independent driving for someone in his situation. As much as Id love to sell the van, I also recommend that you give it some time to see how he progresses. You may find that the vehicles that you have today are sufficient. You may also come to find that a van is perfect for him. Time will tell And youll soon learn to hate it when people tell you that it takes time. Its dreadful irony .
If you feel that you are interested in looking at my van, Ill do what I can to make sure that its available to you. I live two hours North of Pittsburgh if youre willing to make the trip.
I wish you the
I came across your site by accident, but I found it very imformative. I met a wonderful guy who is a quadraplegic from a football accident. We go to the same college, Im a cheerleader and Id always see this gorgeous guy at the games watching me, one day one of his friends came over and said he wanted to talk to me... well I went over to say hi and since then we have been dating and everything has been great. We are very much in love, and hes so wonderful. There is one problem though, my parents are very critical and not supportive at all. They have met him and see what a great guy he is and how happy the both of us are, but they wont' allow him in their house and Im not allowed to bring him to any family events. This really hurts a lot because I love my family but I love my boyfriend very much too and Im not giving him up . I think my family is very narrowminded and its not fair. They say that I should not be involved with him because hes in a wheelchair and that I should find someone else. I love him like I have never loved anyone and without him Id be miserable.. we even talk of becoming engaged. Have you ever known anyone else in this situation before? What could I do to change their minds? Ive tried everything. Kelly
Youll have to share what he said that helped to sway your attention from the game But in the mean time, you have some tough diplomacy issues to face.
You didnt say how long or how involved that you have been with this gentleman. Are you aware of all of the issues he faces with his situation and have you come to terms in accepting him as is? Do you have a history of poor choices in romance that your parents might be comparing him with? There is no warranty on used items! No one person is perfect. You could be dating someone else with relatively perfect health that your parents find charming but approaches you with very violent tendencies. I pray that your parents would identify with your happiness and support your passion for all that this person in a wheelchair has to offer. I dont know if your parents even know him or see him as you see him.
I have to assume that by trying everything you have sat down and had a heart to heart with your parents and shared exactly how you feel. The fine line of diplomacy can be crossed if you still have partial dependence on your parents and you defy them. I have known people that have faced similar situations as you. Ive seen the results fall on both sides of the fence. The only recommendation that I can offer is to reason with them. Tell them that this is just a phase that youre going through and all of the cool chicks are dating quads! Let them know how important it is to you to be cool, shallow and popular. Help them understand that you really are just dating him for status. When they return with, are you nuts? Ask them if they can handle the truth and love you either way.
I wish you the
very best. Let me know how things go.
Can you recommend any literature, videos, etc about a paraplegic sex life. I am a 52 year old married man and am a complete T-4 paraplegic but have not been educated about what I can do to enhance my sex life. I had a firefighting accident 4 years ago leaving me paralyzed. Any info would be helpful. Thanks!
I wish that there were more options out there for educating spinal injuries about sexual enhancement. Most of the magazines in the grocery store checkout line claim to have the top 10 ways to drive your lover nuts. But the reality of it is that most all people in a longer-term relationship go through a period where they need to get the fire back. People with spinal injuries have a few more issues to deal with. I may not have great advice but the best place to start is at home. Sex is 90% preparation and 10% perspiration. Work on what trips your trigger emotionally. Talk with your urologist and learn what you can about the physical side of things. Explore. Try some devices or even locations designed to bring a little spice into the experience.
I wish you the
I stumbled onto your web site by chance. You are a terrific writer. I nearly feel off my chair with laughter. A few years ago I took my two girls to their gymnastic lessons at the local youth center. As we entered the facility, the girls noticed a man who worked there. He didn't have any hands. He wore hooks in their place. Upon noticing this, My eldest, age 7 at the time, went running over to the guy and began an endless stream of questions. "Hey Mr., what happened to your hands?" "Where did you put them? Does it hurt when I pull on the hooks?" Now being the person that I am, I burst into laughter. I tried to contain myself in hopes the man wouldn't notice that those where my offspring who were yanking on his amputated arms. It was too late, he looked up and spotted me. He had a stern look on his face. All I could think of was, "I am in so much trouble, I hope I can out run this guy". Then he began to chuckle. He walked over to me and said,"I've worked here for 22 years and that's the first time any child has ever touched me, most of the children slink back and won't even look in my direction when I walk by".
Happy New Year
from Poulsbo, WA
Of all the Christmas gifts that I've received this year, your note to me is the most heart warming. I've taken an extended break from adding to my website but your message is a great reminder of how important it can be to let kids be kids. I hope that you don't mind if I post your story. The openness of your children is a wonderful lesson for us all and it speaks highly of how they were raised. It sounds like your offspring may have touched this gentleman in a way that he'll hold close to his heart for a very long time. Thank you for sharing.
Best wishes for happy New Year!
I was just on your website and found it while looking for information on neck injuries. My "cousin" in-law is 21 and broke her neck diving into a pool she thought was 8ft deep and was really only 3ft deep. This happened 3 weeks ago. We are planning on our first visit to her in the next week. She was out of town when this happen and has just been moved back home. I must admit that I am very nervous about going to see her and at a loss for words. Any advice?
Be open. Say how you feel and don't be afraid to ask questions. Keep in mind that your cousin-in-law may not have the answers. And that's Okay too. Just be real.
We've plenty in common. I've 13 years of C5-6 complete quad on you (1977 auto accident) but I can't deny the similarities of our lives and attitudes. I'll not say much more for now. I've recently completed my book, "Will Girls Still Like Me?" you'll find a chapter called "Dying Young" attached as an MSWord document. Despite the grim title, the message is meant to be hopeful. Read it when you find a minute. Agree with my point or not, I'll look forward to corresponding with you. Thanks!
My hats off to you and your efforts. It takes a lot of gumption and gut to write a book let alone a lot of words... but, it sounds like you have that under control.
Agree or not with the method or the madness, a story that needs told will find its messenger. You are a messenger.
Your chapter on Dying Young reflects closely on the perils of those I've known. And a few of the characters are far too close to home. The message is clear. The story is all too familiar. But who's responsible? Who takes control of this captive creature that forbids freedom of movement? Who will open the doors of expanded opportunities and let paralysis become an event of the past like Polio? Its all possible. And I feel that its very probable.
I don't fault those who have had very public lives and tragedies with holding their story within and choosing privacy and peace of mind.
Am I doing more harm than good to the cause of a cure by living a life, loving along the way, seeking self-sufficiency and promoting a positive state of mind? Am I restricting the potential of public outcry over the damning oppression of paralysis? The answer is yes.
Who is responsible? I am. All of us who choose to live in the best imaginable way in unimaginable circumstances, are to blame. Inspiration seldom receives pity. Choose your path. Either way you will have made a difference.
The message will find its messenger. I pray that you keep finding the words.
**I did not publish Price's chapter on my web site. I hope that my response provokes interest. Look for his book!**
My name is Jamie and I am a student in Michigan. I am doing a report on Quadriplegia in Anatomy and Physiology so I can better understand my Aunt Lianne who has been a "Quad" since I was very young. She is very dear to me and I guess the more I know the more I get comfortable with her. Does that make sense? Well, back to my question. I have been serching for an answer about life expectancy and I have been getting a little nervous. No one has been of any help and I am starting to worry about my Aunt. I hope none of this is offensive to you. And I do understand if you do not want to write back to a strange girl who maybe hitting something personal. Yet it you would email me back I would be vary thankful to you. I would even leave you alone! Thank you for your web site. It has been a great deal of help. I cried when I looked at your pictures. I remember seeing my aunt in the "halo". I was young and it was very sad and confusing. Still is but hopefully this will help me. I sound so selfish. Anyway, I will end with this. I see God working and touching so many lives through you. I read the feedback and they are wonderfull, filled with true people and true feelings. You are blessed. : ) The Strange and maybe too personal girl, Jamie
I think I bridged the "too personal" gap on my site a while ago. But then, I have no doubt that someday I may challenged by someone's question. Until then, no problem. Life expectancy for a quad has a lot of factors involved that range from personal drive and life style to heredity. To the best of my knowledge, the University of Alabama has one of the largest statistical research centers that could help answer your question. Here is the link to their site: http://main.uab.edu/show.asp?durki=10766.
Here is some information from their site: Life expectancy is the average remaining years of life for an individual. Life expectancies for persons with SCI continue to increase, but are still somewhat below life expectancies for those with no spinal cord injury. Mortality rates are significantly higher during the first year after injury than during subsequent years, particularly for severely injured persons.
|Age at Injury||No SCl||Motor Functional at any Level||Para||Low Tetra (C5-C8)||High Tetra (C1-C4)||Ventilator Dependent
at any Level
hope that this information helps answer your questions. I believe that its far more
important to live all the years of your life. Quality of life over quantity of years will
produce far more happiness. I wish you and your Aunt the very best.
I am a senior nursing student at UNCG. We watched your video today in class and our instructor gave us your website address. I have just spent the last hour reading everything on your website. I wanted you to know how much I enjoyed and learned from both your video and website. You are very charismatic and have a great sense of humor! I also loved the stories and true experiences you shared on your website. I haven't had a patient with a spinal cord injury yet, nor do I know anyone personally who has a sci. Your video made a big impact on our class and we gained a lot of valuable insight into the challenges created by a spinal cord injury. It was much more enlightening than our textbook! I am by nature a kind and helpful person. So thanks for reminding me of how important it is to foster independence in my patients and no matter how busy I am during my shift to always show my patients I care.
I appreciate you taking the time to share your experiences
with us. You are an excellent public speaker and truly have a gift for story
telling. Thanks also for recharging my batteries with regard to the power of
positive thinking! I am normally a very positive person, but you know how life's
stressors can sometimes pile up and get you down. I think that you are an amazing
guy and an inspiration to others.
I am very humbled and honored by your note. Dr. Jenny opened the door for me some time ago to speak to the students at UNCG and it was a great experience. Thank you for the compliments. I really don't see myself through the same description as you've used. I've only adopted a life that seems as close to a life that I feel that I should lead regardless of the challenges I face with being paralyzed.
your position, you will see so many different types of personalities, physical and
emotional challenges. I pray that you have the opportunity to truly make a difference in
those that you touch. You may never know it, but with your openness with me, I have little
doubt that you've not already touched the hearts of many. Thank you. Please tell Dr. Jenny
that I said "hello."
I found your site because my patient is in the process of setting up a program to enable him to use the computer using his voice. I take care of him in his home part-time. So, today I thought I'd find some stuff that might be of interest to him and to me. Your personal stories are very interesting and well written. I am always amazed by my patient (who I also consider a friend.) He is taken care of by nurses 20 hours a day and by his elderly parents 24 hours a day. I love to go there because there is such love in their home and I feel that I make a difference for him emotionally by lifting his spirits which helps lift mine.
I have more to read on your site and I will certainly let
him know it. He is home bound and has a great sense of humor. He's sure to
Barbara, I appreciate your note and the sincere interest that you have taken in adding happiness to someone's life. Its great to hear that there is so much love in the home of your patient. Its also great that you recognize it and contribute to the loving environment.
you the very best,
Dear Mark, I wrote you a while back about meeting a beautiful man who uses a wheelchair at a friend's funeral. I was wondering if I should ask him out even though I'm much older and you gave me a qualified go-for-it. Well, almost two months ago I got up my courage and did. He seemed fairly receptive to a date if it was something casual -- just hang around my house and watch a movie. He said he doesn't go out much. An hour before he was supposed to arrive, he called to say he couldn't come. Long story short, a couple of months of sporadic e-mails and phone calls went by. One of the phone calls was two hours long and lasted till 2:30 in the morning. It felt like we'd made it onto intimate ground and had even carefully broached the topic of sex. There was a fair amount of soul-baring on my part and I think I came on pretty strong -- in retrospect, probably too strong and too sexually. Still, he did not shrink from it and ended up the conversation saying "Dream about me," which I took as returned flirtation.
He called last Tuesday to say that he would be coming over this Saturday. We set a time (5:00) and agreed that when he got close to my house (he lives two hours away) he'd call on his cell so I could guide him to my door with directions. Guess what? He never showed. Never called. I had dinner for him, a movie to watch, all kinds of sweet, caring, loving scenarios in my head, including a sports massage of his hands, arms, shoulders, neck, and head as he's a handcycle athlete. I feel foolish and humiliated. Horrified that it might be a no-show, I left one message at 6:30 and another at 10:00 on his cell voice mail (unless something happened to him, he clearly had his phone off to avoid my the possibility of a call from me). The first message was basically wondering when he'd get there but beginning to fear he wasn't coming; the second was more like, Did I misunderstand our plans? Are you in a ditch somewhere? Did I come on too sleazy in my e-mails? Or are you just incredibly mean and rude? This might just be a case of he-was-a-jerk-before-his-injury-so-why-should-he-be-any-different-now. He's only 25 and probably not too mature; he was injured almost three years ago, and says he's had a couple girlfriends since then. I know you are not a relationship guru, but could he be pushing me away because of his injury?
Whatever the reason, I feel I have made all the overtures that are appropriate. He knows I have a huge crush on him and am interested in him romantically. Now I just have to stop pursuing him and LET IT GO. I will not be calling him or e-mailing him again. I guess I am writing to say that there are able-bodied mature people who can feel genuine desire and empathy -- dare I say love before I really knew him? -- for someone who happens to use a wheelchair. And this particular able-bodied woman is crushed, heartbroken, and deeply disappointed that she got stood up by a man whose chair she saw right past. He didn't even give me a chance to love him and was purposefully hurtful to me besides.
Take care. -- Dana
I do remember your first note. You've opened up and expressed your thoughts about this guy which is great. I known that it doesn't always work out. But at least you should expect some courtesy! The level of respect this guy showed you is no result of being in a wheelchair. I do feel that a disability can amplify someone's personality both good and bad. Someone who is pretty motivated can become highly motivated and someone that is an ass, well... they can become unbearable asses. What you've done has been a great learning experience. You've proven to yourself that you can care for someone based on the person not just on the facade. And that's a good thing.
I pray that you find someone as open and caring as you. In this
case, you have lost nothing and you have gained the satisfaction of trying. I know that
sounds all well and good but when someone crushes you and takes advantage of your kindness
it can really suck. You gave him a chance. Be done with him...
My name is Debi and I live in Florida. I felt compelled to write to you, I have recently met someone on-line that is a T-12 paraplegic. Well, I must admit when I first heard it--it sounded Chinese--lol. I, myself am an able-bodied female and knew nothing about this kind of injury, with the exception of Christopher Reeves. Well, since chatting with this person(MALE) I cannot seem to get my hands on enough information on it's care & cure. I think everyone should know more about it--but let's face it, unless it's happened to you, why would anyone care enough to learn,right? This person I plan to meet in person in the very near future, and couldn't care less that he can't walk or even run, this person has touched my heart more in one month's time, than most people could in a lifetime. Does it all have to be about sex? Sex is intimacy and intimacy does not have to be physical. I loved your writing and wanted to applaud you for it!!!!!!!!!!!!!
More men oughta be like you, and my new found friend. It's not the arms or the legs that make the MAN!!!!!!!!!!! It's the soul. You, my friend have more substance and courage than any set of legs running a marathon. I wish you the best, but it quite frankly doesn't sound as if you need much, because YOU ARE THE BEST!
With all my heart,
If ever I need a pick-me-up, I'll re-read your note! Thank you. You're very kind. I hope that this person is all that you imagine him to be. I do feel that intimacy is not all about sex but I have to admit that sex isn't too bad either. It just depends on the relationship if intimacy is the focus or its simply the physical contact. Intimacy is more about the heart. And it sounds like you have a big one!
Take care and best wishes,
I just wanted to tell you that you are a wonderful man and a real inspiration. Your positive outlook and can-do attitude is really amazing. I especially appreciate the sort of universal "No matter what situation you're in you can choose to embrace life" outlook. Thank you for sharing your life and helping others. I wish you the best in everything!
I am so grateful for your thoughts. You've made my day. I do think that you're right-on about embracing life being a choice.
Hello and Thanks,
I arrived at your website totally inadvertently, or perhaps not. I found it very inspiring and uplifting. I have been dealing with a disc problem at L5-S1, and after three epidural injections with minimal results, have been taking Morphine for over two years. It has been difficult to stay upbeat and motivated with finances disappearing, living in a tiny studio apartment, and fear of operations with only 66% chance of any improvement.
Your website and stories have demonstrated that people going though difficulties with their physical body can overcome many obstacles, and that their is still so much joy and goodness in Life. I am fortunate like you to have many wonderful friends, and the ability to communicate with others, which is so important. I'm going to try to get a little exercise, and keep looking for employment that fits my abilities (workers comp ran out a year ago, except medical thank God). Best wishes to you and yours, and again, thank you for sharing your stories. They are a great help. Sincerely, Greg Garcia
I think that you may have a tough road but you've captured such an important part of life in only a few words. People can overcome so many incredible obstacles with a positive attitude, a few friends and family.
on keeping on! You are on the right track.
My sister had brainstem surgery - walked into the hospital, woke up not being able to breathe, move, or speak. The surgeon claims he was 'successful' with the surgery, getting all of the tumour, but I don't know how he sleeps at night. Janice regained some swallow and (quiet) voice 7 months post op, so we are grateful that we can communicate, however, she is so depressed. My mother is taking the position of primary caregiver at home, and is getting exhausted. Janice can not even move her head to become more comfortable in the middle of the night. To make her story even more upsetting, her husband dumped her after surgery and will not give her cooperative visitation with her 3 year old daughter. They are involved with the legal system - husband thinks she belongs in an institution. She had everything of her own taken away from her and her baby too! There is nothing I can do to fix things for her. Her husband hates our family for bringing her 'home.' The hearings have been postponed and now he is leaving province with Grace. I do not understand how so many bad things can happen to one person who only wanted the ordinary good things in life. I have searched, but have not found anyone in similar (medical) condition. If someone else writes, forward their story to me. I think it would be good for Janice to know that she is not the only one in her condition. Thanks for listening.
It was hard not to swallow my heart when I read your note about Janice. You, Janice and your family have several big issues that you're having to deal with. People can be amazingly resilient. I've seen it before where people face insurmountable odds and yet do incredible things with their lives. There is no question that things have changed dramatically for Janice and her world. With all of the other "stuff" going on, it is probably very hard for her to focus on gaining her strength. Strength does not mean recovery. It means she and the people that love her will find that sense of normalcy in time. Without knowing what your sister's marriage was like before the surgery, it would be unfair to judge her husband. But, he really seems like an unemotional ass! Not to be too judgmental of course. Ass, I tell you! Ass!
I would gladly pass on any contacts to you that I may receive. With your permission, I can place your email address on my web site for direct contact if you wish. Please let me know.
Let your sister find comfort, challenge and strength in you. Show
your mother compassion and listen when she too needs an ear. Do incredible things by doing
the little things well. I wish you and your family the very best.
I recently visited your wonderful website and was hoping that you would be able to provide me with some guidance. I am involved in a relationship with a man who became a C4 quadriplegic five years ago. We have progessed to a point in our relationship where physical intimacy seems imminent. I understand that there may be some personal care issues pertaining to bladder and bowel function that will arise during a physical encounter, but would appreciate your advice on what I might expect. Also, because I have never experienced a sexual encounter with someone disabled, I am unclear how best to ensure that he enjoying the physical sensations of our experience together. I understand that he and I will need to communicate frankly about this situation, but I am hoping that I will not begin our time together completely unprepared. Thank you for any advice you might be able to provide me with, as there are very few resources available concerning these sensitive issues.
You will answer most of your concerns by talking to him about intimacy. No kidding, right? I'm better at giving advice about the obvious. But, here goes... Bowel and bladder management is handled differently by each person so specifics will be hard to offer. But, I can share my opinion on how he may enjoy the physical part of a healthy relationship. Intercourse may not always be the only form of intimacy. And orgasm for him may be much different than ejaculation. Because of the paralysis, he may not be able to fully feel what is going on but he can feel your enjoyment. He may feel just as satisfied as you by enjoying the closeness, the expression and the sincerity of your touch. Knowing that he has been able to satisfy you, can be a terrific rush. Worry less about his need to be satisfied and more on your ability to share the joys that a good sexual relationship has to offer. He may find that feeling your orgasm can be a lot more erotic than wam, bam thank' ya mam. Which for most guys isn't too bad either!
He seems like a lucky guy for having you in his life.
Questions and Comments Shared Archive, Archive 2
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