If you are in a committed relationship with someone with an SCI, read below. Or if you have a spinal cord injury read below....
Caring for the caregiver: I'm excited. I am ready to begin my research related to caregivers of partners with Spinal Cord Injury. I am in grad school at Texas Christian University and my research is about family communication with disabled family members. I am recruiting at least 100 people to complete this anonymous 10 minute survey. SHARE WITH ANYONE AND EVERYONE who is in a romantic relationship (and lives together) with a paralyzed person. For those of you who don't know me, I am married to a C-5/C6 quad 😊 The study is about how caregivers use Facebook. Only the able-bodied person in the relationship with the person with a spinal cord injury should complete the survey. Thanks for your help:) I will share my overall findings with the group once I have analyzed them. My goal is to help all of us:) Ready....go! Here's the link: http://tcucommunication.co1.qualtrics.com/SE/?SID=SV_6Vgj8ZZctjlNDN3 All my best, Gentrie Pool > On Nov 11, 2013, at 3:40 PM, "nichole rohling" <[email protected]> > wrote: > > This sure is an excellent post…….thanks for sharing! > > Nicki > > From: [email protected] [mailto:[email protected]] > Sent: Monday, November 11, 2013 1:32 PM > To: [email protected] > Subject: [QUAD-L] This world suck! > > Hello all, > > Yes, the world sucks, not just for the handicapped people, but for many > able-bodied people. > > The family involved in making that decision, to allow the quad to be taken > off the ventilator will come to regret those moments. Many on this list have > been put under anesthesia, how well could you think after you came to? I > know it said that the man made his own decision. I hope I am not related to > that family! > > All of us have gone through so much and accomplished so many things. Compare > a custodian that cleans bathrooms with Bill Gates the founder of Microsoft. > No matter which way you look at the situation, each one accomplished what > they could. As with all quads, each is different. > > Rufus Beiler, an Amish men in Pennsylvania, fell from a roof and can't even > use his fingers, but without electricity in the home, he devised a system for > a hydraulic elevator, learned computer and is now a successful architect. > Did you hear that world, he couldn't even move a finger. Among the Amish > community there are several success stories of quads making a living and > contributing to their community. Yes, we all face different aspects of our > injury, but in most cases we triumphed. > > Each year on the quad site, most everyone acknowledges their anniversary date > of their accident. Many are sad, bitter while others are hopeless, > fortunately these are a few. Sometimes we dread our anniversary and > sometimes we give thanks. In spite of all the issues that we face, I look > forward to marking another milestone. > > In my opinion, God gave me a gift 46 years post SCI. > > Last week a friend of mine took his life at the end of an electrical cord. > In 1976 my brother (a police officer)took his life after witnessing an > accident of his best friend father, an alcoholic, stepping out in front of a > car to commit suicide. My brother pulled him from under a car and attempted > CPR, no luck.The Police Department's advice, keep your mouth shut and get > over it. > > Then there's me! I'm C5-6, multiple problems just like the rest of us. > After being discharged from a state institution the nurse took my father > aside and gave him some advice. "Take him home, buy him a television and > wait for him to die." This was not a mean comment, this was the mindset of > that time period. > > Boy how things have changed! > > I took my interest of hunting and fishing to open a small business selling > articles of that interest. Having a strong feeling that I was to go into the > electronics field, I approached the office of vocational rehabilitation to > acquire funding for a home correspondence course. No computers back then, > everything was done through the mail. Of course the office of vocational > rehabilitation said "no way," someone without the use of their fingers could > not work on electronics equipment. Okay, they wouldn't pay for it, I would. > After I was three quarters of the way through the course, a miracle happened > they paid for the rest of it. > > Sometimes God put you at the right place at the right time and in my case it > was the CB craze of the 1970's. In this same small single car garage that I > was selling hunting and fishing equipment, along with live night crawlers, I > started servicing CB radios with the help of two part-time technicians that > were attending electronics school. The two part-time technicians were hired > full-time, a third was added part-time, and busting at the seams, I purchased > property and constructed a building on the opposite side of the street. > Within five years I had three full-time technicians, two part-time > technicians, three office people, not including my wife and myself. > > Our business continued to expand, God kept opening new doors and we expanded, > sending business fliers to fire departments in 13 states. We have serviced > fire equipment from every state including Alaska, but not Hawaii. Darn, > missed that one. > > As things would happen, my wife had a health issue, visited the wrong doctor > and the medical bills piled up. > As many of the married quads know, your wife in many cases is your main > caregiver. Any funds that had been built up quickly went for my health care > and hers. The next several years would take us to a very comfortable > lifestyle to living in the red. Well, that is water over the dam. > > After selling the business to cover our bills around 1995, I continued to > manage the business on a part-time basis for the new owner. Unfortunately > the new owner did not have a business head on his shoulders. After his > business fails around 2005, I continued to service fire pagers on a limited > basis. > > Earlier this year I retired from all of electronics and my 62-year-old brain > is trying to learn web site design. > > Yes, we all have our trials and we all have our triumphants. I just wished > they would have given him a chance to see what he could do. He may have > found a cure for cancer. We will never know. > > > Keep going, it's worth it in the end! > > What is your success story? > > Glenn Henry
