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3/12/2007
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!
Mark

4/9/04
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).

2/9/04
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.
Sincerely,
Mickey

Mickey,
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.
Thanks again,
Mark

1/7/04
Hello Mark,
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!

12/26/03
Mark,
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.
Alice

Dear Mark,

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.  I’ll 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 5’8”.  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. “Franklin’s 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 I’ll do a little editorializing.  

Dignity:
     1.) the quality or state of being  worthy , honored or esteemed,
     2.) decorous, elegant deportment,
     3.) a person of high rank or title.

Mark:
    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 don’t 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.

Sincerely,
Alice

Alice,
Stunned, intrigued, enamored, honored and downright grateful. Thank you for your perseverance in sharing your message. I don’t recall this gift being scribed on my note to Santa? But yet here it is. Cloaked in life’s 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. It’s 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 you’ve 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 I’ve 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. Don’t 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. They’re 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.
Sincerely,
Mark

12/19/03 - 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!
Mark

7/3/03
Mark,
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!
Andy

Andy,
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. I’m 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 very best.
Mark

6/24/03
Hi Mark
I’m 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.  Wouldn’t you know it that when I got the helmet I never fell again.   Isn’t that typical.  It’s 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 don’t 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 don’t 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.

My wife and I are moving to Kelowna, British Columbia, Canada in a couple of months.  After we are settled there I am put together a web site along the lines of yours.  I hope that I can be an inspiration to others as you have. Thanks a lot and I hope to hear from you soon.
Darryl

Darryl,
I’m 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 you’ll be pretty darn surprised at all of the stuff you can do.

As for me, I don’t have the use of triceps or hand dexterity. I am a textbook complete C6. I use a manual wheelchair and somehow I’ve 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… it’s 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. It’s really a matter of managing your deficits. And I don’t 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. I’m 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 you!
Mark

6/9/03
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.
Rob

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.

Best wishes,
Mark

6/6/03
Hi Mark,

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!!!!!!
Regards
Brenda

Brenda,
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 you’re 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!
Mark

6/6/03
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!
~J

Thank you very much for your note. Now you have me laughing. I wish you the very best in everything you do as well.
Mark

4/28/03
Dear Mark:
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.

Hello,
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 best!
Mark

4/14/03
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?
Thank you.
Sincerely,
Julee

Julee,
I do hope that your boyfriend is doing well. I’m 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 don’t 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 doesn’t have a good support system or that he’s 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 I’d 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 you’ll 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, I’ll do what I can to make sure that it’s available to you. I live two hours North of Pittsburgh if you’re willing to make the trip.

I wish you the best!
Mark

3/9/03
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

Kelly,
You’ll 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 didn’t 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 don’t 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. I’ve 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 you’re 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.
Mark

 12/30/02
Hi Mark
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!
Tim

Tim,
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 best Tim.
Mark

12/27/02
Hi Mark,
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
Elizabeth

4/18/02
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?
Thanks
jen

Jen,
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.
Good luck,
Mark

3/30/02
Mark!
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!
Price

3/23/02
Dear Mark,
 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

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.

I 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.
Sincerely,
Mark

2/12/02
Hi Mark,
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.
Sincerely,
Leigh

Leigh,
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.

In 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."
Sincerely,
Mark

2/10/02
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 enjoy it.
Take care,
Barbara

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.

Wishing you the very best,
Mark

2/4/02
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.

1/29/02
Dear Mark,

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!!!!!!!!!!!!!

1/29/02
Hello Mark,
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!
Devorah

1/21/02
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

Greg,
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.

Keep on keeping on! You are on the right track.
Mark

1/12/02
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.
Cheryl

1/12/02
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.

Questions and Comments Shared Archive, Archive 2
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