Reeve Foundation Paralysis Community

Apparently I am the biggest nut in the nut house.  Oh well, at least I can admit it.

 

My question today is fear, and I mean the fear and dread of something else bad happening, especially to our kids.  I don’t mean the day to day annoyances, I mean the life altering; kick you in the gut sort of stuff.

 

I learned very early in my adult life that tragedy happens all the time, especially to me.  I was first married when I was 25.  My husband was diagnosed with colon cancer a year after our marriage.  After surgery, several types of chemo, radiation, he died 9 months later.  I was a widow at 27.  In my view you don’t get over it but you ultimately get on with it.  A few years later I married my current husband.  Our life was great until the accident.  We were taking our young boys on vacation when we were hit by a teenager that fell asleep on the highway.  She crossed the median and come into the oncoming traffic.  We all suffered our own injuries but of course nothing compared to the SCI and TBI my husband suffered.  I just had this terrible feeling at that moment…not again.  How can this be happening to me again?  We managed through those difficult first few weeks and then spent 7 months in SCI rehab at Craig Hospital in Colorado.  I met so many people there; SCI patents and their families.  People were paralyzed doing both ordinary and extraordinary things.  With all the stories I have heard, I am astonished that many more people aren’t paralyzed.

 

Here in lies the problem.  I am so afraid that this is going to happen to one of my kids.  Some days I think it turns me into psycho mom.  I hear them jumping on their beds and I am upstairs in a flash warning them of the dangers.  One day they MacGyvered a couple of laundry baskets together and were riding down the basement stairs in them.  I actually yelled at them “Are you two trying to break your necks?”  And that wasn’t just an expression, I was serious.

 

Our oldest son will soon be learning to drive.  I can’t imagine how I am going to calmly sit in the passenger seat during the months of this learning.  Of course I am sending him to Drivers Ed, maybe 2 or 3 times, who knows.  But there is still the expectation that I am going to have to drive with him.  Better yet, how am I going to deal with him actually driving on his own?  I’m thinking that I am going to be a nervous wreck the first few years and I have 2 boys 2 years apart.  Yikes!  I’m still a shaky highway driver myself because of the accident.  I try my best not to show my fear to the boys.  They were in the accident too, and I don’t want them to live in fear but geeze, I just want them to be careful and try to avoid risky behavior 

 

I just wonder how many other SCI families deal with this fear?  There are just so many things that I want to be off limits to the kids.  Motorcycles, trampolines, football, 3- wheelers, 4-wheelers, dirt bikes, diving, driving, hockey, biking.   I know people paralyzed by all of the above.  Do you ever get over the fear that this will happen again?  

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Trish

"Life isn't about waiting for the storm to pass...it's learning to dance in the rain."

Trish: Great questions, many situations are similar to what I am currently going through. My oldest will be 16 in a week, driving age. Our expectation is good grades= drivers license....I bought some extra time. ;-).

My oldest son is diagnoised with cerebral palsy (CP) due to prematurity. We almost lost him several times in his first year due to health complications and an inborn error of metabolism. We survived the early years though I am not quite sure how. Our goal was to let him have an active normal life, be like everyone else. Be careful what you wish for, lol.

When he was about 5, he was diving off the bed, head first. Each dive became more and more daring. I raised my voice with "David, be careful" and before I could finish he interrupted me with, "I know Mom, or I will break my neck". Out of the mouth of babes, huh? I sat back and laughed and cried at the same time. I realized he was doing everything we wanted but at the same time, I was filled with fear. David helped me shelf the fear that day.

Christopher Reeve used to say he was frustrated with folks who became paralyzed with life. I realized I was stopping my son from living due to my fears and vowed to ease up. Now, fast forward 7 years and my youngest, was using our foam sled to take down the stairs, curve and all. Suddenly I hear David shout, "Watch out or you are going to break your neck". This time I heard the words differently. They were like the words of caution my mom used to yell. Somehow the emotion was gone and it was a word of warning to be careful.

Our lives shape us, they create our fears, our joys and our hidden worries. I believe with time, it gets easier.

Wanna meet in the middle and we can trade off sons with driving? The grades have started to go up around here....

I reacted a little differently to my accident.  Maybe because it was doing something so simple.  Sledding in my inlaw's back yard with the kids.  About a year after, my then 23 year old son asked if he could get a motorcycle.  Not entirely sure why he asked my permission, he was 23, about to graduate from college with a job already lined up.  He was paying for it himself.  He was taking a safety course.  But I said yes.  A lot of people were surprised, as I had always been sort of a non-motorcycle type, they were too dangerous (to me).  But I responded that we could wrap him in bubble wrap, and keep him in the yard, and never let him do anything more dangerous than sledding in Grandma's yard ..... oh yea, that doesn;t work, does it.

For those new drivers, definately go the drivers ed route, but make sure they get LOTS of practice driving.  It is the key in my mind to a good driver!  My older daughter is the best of the bunch, and she drove all the time, as I didn;t get hand controls for the first 2 years.  As the oldest at home she drove me anywhere I needed to go, ran most of the errands, and drove her sister around.   If you are too nervous driving with him Trish (understandably) most driver's ed programs will sell you extra hours of drive time.   Or maybe you have relatives or friends (adult friends, not his friends) who will take him out. 

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T 7-8 since 2005

Anxiety. Without it, our species would no longer exist. But it sounds like most of us have enough to keep several species functioning for several millennia! I was a mildly neurotic middle-class psychologist married father of two babies when my wife developed a malignant melanoma followed by a year of chemotherapy followed by a deep depression. Three years later, she had her first symptoms of multiple sclerosis and that was six months before my accident at age 33. My mild neurosis blossomed into a deep seeded anxiety/depression. And like you guys, I was afraid when my daughters swam, when my wife smoked a cigarette, when my wheelchair made a funny noise. And when nothing in particular was going on, I was afraid of my catheter leaking or a bowel accident or...... Today I am not all that afraid. And when you think about it, nothing has really changed except for one thing -- me. Like most, I was unable to tolerate my fear and like most, I thought it was a signal that something was wrong and must be done. So whenever I felt fear, my mind went into high gear and I began to tell myself terrible stories about what could possibly happen and how much I would suffer if that happened. What I've learned and what I try to teach in my psychotherapy practice is that fear is simply an emotion. So when we feel fear, simply feel the fear because there is another emotion coming right around the corner. That is, unless you wrap your arms around the fear and clutched tightly and tell yourselveve stories about the future. Then it will last. But if we can simply feel what we feel and own it as an emotion that has visited us, we are more likely to be able to step outside of it. I still feel fear. And when I do I am able to feel compassion for this kind man (me) who is suffering at the moment.

Someone once asked me if I am feeling fear and if I am noticing that fear with compassion, then who am I, The compassionate observer or the person feeling fear? I think examining that question too deeply could be pretty scary!
dan

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Daniel Gottlieb Ph.D.
www.DrDanGottlieb.com

I don't have kids of my own so I feel a little out of place posting in this thread. But I know my anxiety about my own injury has manifested itself in how I have reacted to things people I love are doing. That is especially true with my young nieces and nephews and with my partner as well. There was a time when I was my worry and anxiety about them made me almost nonfuctional. It was as if I was suddenly aware of how fragile the human body could be and everything worried me. If my partner ran out to get some groceries and was gone 5 minutes longer than he said he would be I would go into instant panic mode, worrying he had been in a car accident or something else bad had happened. I know I started to drive him crazy. When my nieces and nephews came to visit me I became hyper sensitive to what they were doing, and would neurotically worry they might choke on things or cut themselves. It was worry on a totally irrational level. And even though I knew it was irrational, I couldn't stop worrying. It got to the point where nobody wanted to tell me what they were doing for fear I would start to list the ways something bad might happen if they went swimming or went to a movie or even just walked down the street.  It was really not a comfortable way to go through life. It really did border on paranoia sometimes. Although I did worry about myself too, most of the anxiety was directed outward on my family. And I know it was very stressful for them to deal with.

I have gotten better about it with time. I still worry far too much but I have learned to let go of the deep rooted fear that something catastrophic is just waiting to happen to somebody I love. I think some of it was that it was easier to worry about somebody else than myself. Maybe it was a form of denial, I am not sure. Anyway now I probably worry more about myself. Which really isn't that much progress when I think about it, I guess lol. I am semi-joking about it here but anxiety and fear really can create big barriers for me and definately make life more difficult than it really has to be.

I went on a vacation this summer and it was filled with things that were completely anxiety provoking. Everything from riding a boat, boarding an airplane, getting in a beach chair and going down to the water's edge, staying in a hotel. This was all new to me and also for my family and I think they were just as anxious as I was but in a different way. At some point though my mother said to me "you just have to let go of the fear and try." And letting of that fear was so hard. But in the end so worth it. To steer this back somewhat to the original post, I guess my point is it seems for me anyways that once I are on the verge of the point of letting go, that is when the worry is the most acute.

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"Don't be silly, Toto. Scarecrows don't talk. "