BLOG – Keeping and Strengthening Friendships Post-Injury

Our Article Appears in "New Mobility Magazine" this Month

It’s no surprise that a spinal cord injury can change friendships — in some cases making them stronger, and in other cases, causing them to end abruptly. Sometimes that’s for the best since fair weather friends may not be friends at all.

Screen Shot 2016-04-04 at 2.34.08 PMSame Friends, Different Reality

Almost inevitably, there are social fears after the trauma of a spinal cord injury.

Megan, injured at age 18 in 1995, says that beyond the physical changes she faced after her T5-L1 injury, she felt certain she was going to lose all her friends — and that was terrifying. “My greatest fear was that all of my friends would abandon me and that I would never have a family or a husband or children or anything like that,” she says.    “at I would have to give up any thought of ever having a normal life.”

Luckily, none of that came to pass. “I had enormous support from friends, a very close circle of friends, that were always there and said, ‘no matter what, we’ll be there for you,’ which was very helpful because I went back to school three months after my accident.”

Today when Megan addresses her friends on the subject of her life with a disability, she always tells them, “It’s not easy to live with any kind of disability, it’s a hard life, but at the same time you can be happy and fulfilled.”

For Vicki, a C5-6 quad, today the biggest problem with her friendships is reminding them of the more concrete realities of using a wheelchair. “With my friends, it’s really funny, because they forget I use a wheelchair,” she says. “ They make plans to go somewhere, and I say, ‘what’s the parking like?’ Or, ‘am I going to be able to go to the bathroom at this place?’ and they suddenly gasp, ‘Oh! I for- got! We’ll have to reconsider.’ It happens.”

After Vicki’s diving accident, the then-22-year-old quickly realized that in addition to handling all the physical changes of her injury, she also had to take the lead on helping her friends deal with her injury. is is a strategy she employs today as well.

1622632_684127815003288_2867750086661114690_n

Vicki, lower left, just 18 months after her injury

“When I meet someone new, it is my job to make them feel comfortable with my wheelchair,” Vicki says. “It’s still true nearly 30 years later. I meet people who are uncomfortable with my injury and the way my body looks, and I have to help them understand that I’m OK.”

This is especially important during those times when she’s really not all that OK.

“Sometimes I’ll have a change in my health status. Things like about with autonomic dysreflexia or a broken bone from a fall,” she says. “When I can see the worry on my friends’ faces — that’s when I know I have to get back to reassuring them it’s all part of living with paralysis.”

After all, nondisabled friends have no idea what it’s like to live with an SCI unless they’re told — as uncomfortable as telling them might be.

Chase has lived with T11-12 paraplegia since age 17, and says that although it took a while for his friends to become comfortable with him again after his 2007 injury, they got through it. “I’m closer with my friends now, definitely very close with all my friends. I’d say I’m with them probably every day,” he says. His secret? Being open and honest about all that his injury entails, and showing he’s OK with it. “I came out and just said, you know, ‘Hey guys, I wear diapers sometimes, I pee my pants sometimes, and I’m going to need help doing this — help doing that,’ and they just kind of accepted it. And, it’s normal now.”

The key is to remember things are different for everyone post-injury, including our friends, says Tony, a C5-7 quad injured 25 years ago when he was 27 — but that most situations improve with time. “Just understand that this is a learning experience,” he says. “Everything is going to change because the person in the wheelchair is going to get better at some things. And the person in the wheelchair is probably not going to need some of the things that they used to need [right after their injury], they’re going to end up needing new things. Everything is going to evolve and change — but for the better.”

It may sound hard to believe that life can get better after a spinal cord injury, but Michelle, a C6-7 quad injured at the age of 21 in 2002, says it’s true for her as well. “I am very happy,” she says. “I always say it’s kind of strange, it took this tragedy to happen to me to put my life in perspective. Like, before I was injured, I didn’t go to concerts, I didn’t go to plays, I really didn’t go out of my comfort zone, but now it’s like I push myself to do things like that.”

Perhaps having wonderful, supportive friends has helped her recovery? “My friends have been great,” she says. They were very supportive while she was in rehab and that continued when she was released. “Before we got the lift in the house, if I needed someone to help me with stairs, they would.”

And she is supportive to them in turn. “You know how there’s that one friend in every bunch who everybody needs to get advice from? Well, that’s me! So now everybody’s always at my house — ‘Oh Michelle, I need to talk,’” she says. “So they’re great, I love them! And if I ever need a ride, I always have one.”

The Pain of Friendship Lost

Giving yourself some time to adjust, and your friends’ as well, is often all that’s needed for most relationships to get back on track and feel comfortable again. But for some friends, nothing seems to work.

At age 62, in 2008, Nova had a health issue that resulted in T6 paraplegia. She says her greatest fear was losing her deeply loved, longtime friends. Not only did that partially come true, but she was shocked by how easy it was for some of them to detach.

“I have written emails to people who didn’t know what happened to me, or heard back from people who did know what happened to me, and tried to touch bases, and no response,” Nova recalls. “And I remember writing to this one woman whom I’ve known for 25 years, saying: ‘I don’t want to pressure you, and I don’t want to impose upon you, but I’m hurt, and we have such history with each other. I love you, what’s wrong?’ One friend didn’t reply at all. Another wrote back: ‘I feel like an awful person, I just don’t know how to handle it.’ And I responded, ‘I’m totally willing to help you handle it because I don’t want you out of my life. I’m not embarrassed to answer anything, feel free to ask.’”

The friend who wrote she felt like an awful person is much younger than Nova and they had become friends while work- ing together on setting up commercials and personal appearances for professional athletes. Nova was an important mentor and as the friendship grew, Nova recalls, “She even began to call me her mother. Her own mother had been dead for a long while.”

Nova’s husband Don called this friend the day after her surgery to inform her about the fall and her diagnosis. “Don said she could hardly speak because she was crying so hard. He tried to console her and called her a few times after that to give her updates on my progress,” she says. “She sent a huge box of presents to the hospital that I received a week after she heard the news.”

“Almost six weeks after my surgery — when I was not Screen Shot 2016-04-04 at 2.18.03 PMdrugged so deeply that I could not talk — I did the best I could to write her a thank you note, and to call her. For weeks, I only got her voice mail and left countless messages. She never called back.”

“It’s been almost eight years now since Don reached out to her to give her the news about what had happened to me. My heart is broken, and I have tried every way to give her reassurances about how much progress I have been making. I also want to let her know I will still answer any questions she has and try anything to help her feel more comfortable with me.”

Nova says that though she was not able to recover that particular painful loss, she has learned to focus on those who journey with her. “I am totally blessed with relationships that actually grew and intensified in the love expressed in friendships both new and old,” she says. “So, I have chosen to focus on those relationships and put all of my energy into honoring them with reciprocal love and friendship.”

Breaking Free of the Friend Zone

Nick was 17 and still in high school when he was injured at the C5-6 level in 1995. He says it was hard finding genuine friends at first.

“Some friends were great, they were there taking all the blows with me, and really supportive of everything going on and wanted to help with whatever they could,” Nick remembers. “Other friends just kind of disappeared, or started avoiding me in the hallways and not re- turning phone calls. So, I pretty quickly realized who my true friends were, and people who were just there for their own selfish reasons. It was a great learning experience for me, as it kind of gave me a good crash course on true friendship, and the friends that stuck with me are still around me today.”

One of those friends who stuck with Nick was Suzzi. And over time that friendship bloomed into romance and then marriage.

“My wife and I were friends in high school and ended up going to the same community college, and during that time, our friendship turned into a relationship,” says Nick. “We dated for six years, all through college, and then we were married the summer after I graduated.”

Suzzi says she’s a very strong woman and her marriage has only enhanced that strength. “I believe that our relationship has only made me a stronger person both individually and together. I know that friends and family had questions at first about our commitment, but once they got to know Nick, they understood why we worked so well.”

As with any successful relationship, Nick says a big part of theirs is communication. “We can’t avoid the fact that I’m in a wheelchair, I have a spinal cord injury, and there is stu that comes along with that,” he says. “Early on, we really had to talk about how that had an effect on the relationship and how it could slow things down, or kind of hinder activities. But, we did a really good job of communicating, we’re very open with each other, very open about how she felt and also very open about how I felt, and it’s worked, it’s worked out really well.”

The Psychology of Friendship

“In my mind there are two types of people who leave a friendship, and they are very distinct,” says Dr. Lester Butt, rehabilitation psychologist at Craig Hospital, in Denver, Colorado. “It’s important for people with a spinal cord injury to appreciate the difference.”

“The first set of people who leave are those with whom your relationship was predicated upon fragile kinds of parameters, things like, ‘all we did is party,’ ‘all we did was go out and hunt.’ These are activity-based relationships,” he explains, and “if the person with a disability can no longer engage in those activities, the friendship might not have as much power for the nondisabled person, and they can leave.”

The second subgroup of friends who can detach, withdraw or potentially leave is very different from the first network. “These are people who care so deeply, care so much, or feel that they have such little skills in terms of understanding that they pull away,” he says. “The person with the injury has to appreciate or discriminate between those two, to be able to reach out to the latter group. It is vital not to leave friends behind who are really caring.”

Johnathan, who became paraplegic at age 19, tells how he was able to preserve friendships that fell in the second subgroup. In the beginning, his friends came to the hospital every day. “But once I was home, my friends would visit and say, ‘We’re just stopping by, and we’re going to get something to eat.’ And I would think after they left, ‘Why won’t you just come and get me, and take me to get something to eat with you, instead of only just stopping by?’”

So he let them know how he felt.

“And once my friends understood that I wanted to hang out, and come out, and do different things, we started to actually go do those different things.”

Butt says Johnathan’s experience is typical of the way strong friendships can begin to grow after a spinal cord injury — and of how the person with the disability usually must take the lead.

“It is very important to be able to educate friends that even though how someone with a spinal cord injury gets from A to B might be transformed, and how they access social or work activities may change, their heart and their brain remain the same,” says Butt. “And usually, so do their values, dreams, goals and humanity.”

_____________________________________________________________

Writing from Chicago, Illinois, Stephanie Lollino is executive producer at Facing Disability for Families Facing Spinal Cord Injury (www.facingdisability.com)

BLOG – Bowel Programs for Spinal Cord Injury

What Do The Experts Say?

Home Accessible Bathroom

A new Factsheet that summarizes the latest medical advice about dealing with bowel health after a spinal cord injury has just been issued in a new Fact Sheet from the Model Systems Knowledge Translation Center (MSKTC). The MSKTC collected data about the topic from the 14 best SCI research hospitals across the nation, and put it into a short Factsheet with plain language that people can understand and use in their everyday lives. In this publication, Gianna M. Rodriguez, M.D., co-investigator of the University of Michigan Spinal Cord Injury Model System (UM-SCIMS), collaborated with the MSKTC to develop the Factsheet: “Bowel Function after SCI.”  The factsheet explains the various components of a bowel program, the importance of maintaining bowel function, and surgical options.

Here is an excerpt of the overview:

  • A spinal cord injury can lead to bowel problems.
  • You may have problems moving waste through your colon (or large intestine)
  • You may pass stool when you do not want to, or stool may be hard to pass
  • These problems can cause pain in your abdomen.
  • When eating, you may feel full sooner than normal, or you may eat less than you usually do.
  • Bowel problems can contribute to depression or anxiety. You may feel overly concerned about not being able to control bowel movements in public. You may not want to do things outside your home.
  • A bowel program can help you control bowel movements. Following a bowel program can help you avoid other problems and perhaps bowel surgery.

A detailed description of how to develop and follow a bowel program is  outlined in detail. It includes sections called, What is a bowel program? What if I cannot do a bowel program or it does not work,? What is a colostomy? and Why is maintaining bowel function so important?

To read the entire fact sheet click here:

BLOG – Actor Uses Exoskeleton Onstage

To play Shakespeare's Richard III

Michael Patrick Thornton

Actor Michael Patrick Thornton is getting rave reviews for his performance as Shakespeare’s Richard III at the Steppenwolf Theatre in Chicago, and for a robotic breakthrough that helped make it all happen. Thornton is the first actor with paraplegia to do a stage performance with an exoskeleton.

A 2003 spinal stroke changed Thornton’s acting career; after his injury he played a continuing role in the TV series “Private Practice” while in a wheelchair. However, the addition of the exoskeleton makes it possible for him to play a role while standing up.

“I remember laying in a hospital bed here not being able to talk; and so to go from there to being onstage with my theater group, the Gift at Steppenwolf,” Thornton said. “It’s been one hell of a trajectory.”

Click here to see Thompson’s Story from ABC 7 Eyewitness News

BLOG – Nova and Don, a Love Story…

For Grown-Ups

 

Spinal cord injuries are now occurring later in life. The average age at injury in the US has been steadily increasing since 2010, and now stands at 42.6 years.

Nova and Don’s experience in coping tells a story that will resonate with many couples, and especially to seniors who are dealing with a new injury.
______________________________________________________________

Photo by: Rona Talcott

Photo by: Rona Talcott

Making their way through sickness and health, Nova and Don have weathered the storm. Nova was injured in 2008, at the age of 62. Today, she is living with paraplegia and the love of her life.

There was a lot Nova’s Vietnam veteran husband was not prepared to face. Don says, “Her blood pressure was all over the place; I didn’t want to be responsible for the death of my wife. I needed to learn more. The doctors worked really hard with us. Things like…how do you turn their body, how do you hold them so they can sit in an upright position, how do you lift them? There were a thousand things that I wasn’t prepared for. I was scared.”

Nova saw it differently – especially at first. Nova shared her love story with us. The couple has known each other since their mid-twenties.

“Don and his first wife were actually my best friends from the time I was 20 years, old until we were in our mid-thirties,” Nova recalls. “Don worked with my first husband. Our families had a special friendship that became just as close as a family. We spent holidays together and shared many milestones.” Somewhere along the way, their friendship dissolved, and both couples divorced. But Don never forgot Nova.

“One day, Don and I got together for a cup of coffee to catch up on all that had transpired during the years we were not in touch with each other.

I can still feel the emotion that hit me as we sat with each other talking about so many painful things that had gone on with both of us.  I listened with intensity and was looking into Don’s eyes as he was filling me in on what had gone on. He had custody of two of his three children and was working hard to handle multiple responsibilities.  I also was going through a very painful divorce. We were both dealing with the termination of marriages that had lasted over 16 years. Don was also dealing with the effects of his life as a retired Special Forces Green Beret, who fought in the Vietnam War.”

“I was overwhelmed by the feelings of falling in love with Don during that time we were catching up with each other. My first husband was my high school sweetheart and the only man I had ever been in love with. So the experience I was having as I was talking with Don was exciting and very real.”

“I told him what I was feeling, and he told me that he had also been in love with me for a long time. This was shocking and made me feel like we sounded like a soap opera!”

“We got married six months after that cup of coffee. Don and I bit off a lot because both of our lives had major complications and we had many obstacles to deal with. We had five children between the two of us, and there were many problems to handle.” Continue reading

BLOG – Can an Unorthodox Operation Reverse Paraplegia?

"New Yorker" Magazine Focuses on the Story

Surgical recipient, Darek Fidyka Photo: Carla Van De Puttelaar for The New Yorker

“One Small Step,” in the January 25th issue of the ” New Yorker” magazine, focuses on the story of Darek Fidyka,  a 41-year-old Polish paraplegic, and a landmark operation that has enabled him to walk.  Fidyka, who was attacked with a knife in 2010 and is a T9 paraplegic, underwent an unorthodox operation In 2012 in which some of his own olfactory ensheathing cells, which run from the nose to the brain, were surgically removed and inserted into the damaged area of his spinal cord.  As a result of the operation and intense physical therapy, today he has sensation in his legs and is able to walk while wearing leg braces.

 

The surgery, which was performed by neurosurgeon Pawel Tabakow in Wroclaw, Poland, is a result of his collaboration with maverick English scientist Geoffrey Raisman of the Institute of Neurology at University College, London.   Raisman has been developing the idea of transplanting nerves from the nasal cavity, which have a unique ability to regenerate, into damaged spinal cords for more than 20 years. Fidyka is their first human subject.
Continue reading

BLOG – New Beginning for Vets With ReWalk

The ReWalk system is a robotic exoskeleton that allows individuals with certain types of paralysis stand and walk. After a test involving 45 veterans, the Department of Veterans Affairs recently announced that it will pay for the FDA-approved robotic legs that could enable some veterans with spinal cord injuries to walk again. The ReWalk system is currently priced at about $77,000.

Of the approximately 42,000 veterans with paralysis, only a fraction would meet the requirement for an exoskeleton. The apparatus has specific height and weight requirements and is designed only for people with paraplegia, not quadriplegia. A supportive belt around the patient’s waist keeps the suit in place, and a backpack holds the computer and rechargeable battery. Crutches are used for stability, and the FDA requires that an assistant is nearby.

Gene Laureano, 53, is hoping his application for robotic legs will go through soon.

Screen Shot 2016-01-08 at 10.50.22 AM

Laureano and the ReWalk device with a caregiver

Continue reading

BLOG – Video looks at College Life After SCI

A 12-minute video from Shepherd Center and Craig Hospital

A high-quality video featuring the stories of students with spinal cord injuries who are attending college has just been released by the Shepherd Center. The 12-minute program contains detailed accounts of young men and women — all with different levels of injury –figuring out how to navigate literally anything they want to achieve in a university setting.  The project took nearly a year to complete and was made possible with funding from the NCR Foundation and in conjunction with Ramp-Less-Traveled and Craig Hospital.

Screen Shot 2015-12-01 at 12.39.54 PM

Screenshot from the video

The video focuses on what it’s like to attend college or university after a spinal cord injury. One of the biggest hurdles is not knowing what college life will be like for someone in a wheelchair.  Once the decision to attend college is made, campus disability services personnel are available to help with the details.  Academic accessibility, such as note and test taking, and e-books, as well as environmental accessibility for classrooms, dorms, and on-campus transportation will all be coordinated through them.  The video shows students who are attending school after injury enjoying the many social aspects of college life – participating in sports, clubs, theater, Greek life, and hanging out with friends.

To see the video click here:

To read more about the personal experiences of students going to college with SCI, read our latest article in New Mobility magazine, Back To School: Stories of Success on Campus written by our Executive Producer, Stephanie D. Lollino.

BLOG – Giving Thanks

Remembering Jeff Shannon; A re-post from November 2013.

FB profile (3)Jeff was a veteran writer on disability issues, a longtime movie reviewer and film historian as well as a regular contributor to FacingDisability.com. Jeff was also a C-5/6 quad, who was injured in 1979 at age 17. We are proud to have the thoughtful, provocative and honest voice of Jeff Shannon, and in his memory, would like to share his 2013 Thanksgiving FacingDisability blog post, “Giving Thanks on the 2-for-1 Plan.”

Continue reading

BLOG – What SCI Family Caregivers Need to Know

It’s been one year since President Obama declared November National Family Caregivers Month to, “salute the people who care for their loved ones while protecting their dignity and individuality.”

Family.CaregiverWith a spinal cord injury (SCI), it’s often a family member who takes over the caregiving when a person leaves the hospital. It’s a big life-change for everyone. The individual is no longer a patient, yet often has urgent medical needs that are not going away any time soon — if ever. Life for the newly paralyzed person has changed so much that they need someone around who knows just as much about their heart as their injury. Sometimes, a family member is the only one who fits the bill.

SCI caregiving has difficulties of its own. And while they vary with the individual, here is a useful summary, put together by the National Caregivers Library, of the emotions commonly experienced after spinal cord injury:

 

  • Feelings of dependency may cause your loved one to withdraw; the idea of losing even the smallest bit of autonomy can be almost intolerable.
  • He or she may think they’ve become a burden to you and others. They may feel they’re pulling everybody down, and the family would be better off without them.
  • Continue reading

BLOG – Trick or Treat — In a Wheelchair

Everybody loves Halloween and the idea of trick-or-treating – adults included. Children with spinal cord injuries can join in the fun and even incorporate their wheelchair into their costumes. Here are some special considerations:

For a kid that rolls, almost any costume can be made wheelchair-friendly. co. And they don’t have to be expensive to be fun.Screen Shot 2015-10-26 at 2.28.00 PM

Kids can opt to be anything from vampires to royalty. For your little princesses, a wheelchair can be made into a magic coach or fancy limousine. For those sporty ‘lil guys, a wheelchair can be a fast fantasy car or a speeding train engine.

A wheelchair makes a great accessory to a conductor’s costume or even an astronaut’s costume. There are no limits but your imagination. Continue reading