Reeve Foundation Paralysis Community

Dr. Gottlieb,

 

Something you said last week really made me think.  Maybe I don’t really “get it.”  Much like your ex-wife, I know every detail.  I know AD.  I change SP caths, trachs, suction, nebulize, brush teeth, shave, dress, transfer, shower, and feed.  I can fix wheelchairs, ramps, and hospital beds.  I go to appointments.  I know his medications.  You name it, I can do it.  I can even do the bowel program and eat a donut at the same time.  I’m always trying to multi task because there is never enough time in the day.  I left our kids behind in Indianapolis and spent 7 months in Colorado at rehab with my husband.  I felt like I was really the one that got rehabbed.  Most of the time was spent teaching me how to care for my husband.  I learned it all, but your post made me wonder if I really get it.  I probably don't.

 

I know SCI, but do I get it.  Now I’m not sure.  I get care, but what I don’t get is why my husband seems to have little motivation, why he can spend hours on the computer and no time with his kids, why he gives up so easily.  I know there are 5000 things he can’t do, but the 100 he can do he doesn’t unless I insist.  I don’t get why I seem to want more out of his life than he wants himself.  I don’t get why he seems to have no emotions about anything anymore.  I don’t even get why he isn’t angry at this teenage girl that caused his paralysis, but he isn’t.

 

My question is as spouses, parents, brothers, sisters and friends how can we get it?  I want to “get it” but how.  Short of actually suffering an injury ourselves, can we ever fully get it?  I can be with my husband every day and see how his life has changed, but I think I must not have a clue what it is like to live inside his body both physically and mentally. 

 

I guess on the flip side, can he really get it about how this has impacted me.  He sees me doing everything, but I am not sure that he understands the pressure, stress, and responsibility of having someone else’s health and welfare thrust upon you.  I’m not sure that he knows that every night I hope and pray there is not medical emergency with the kids or him, that there is no fire, that nobody breaks in.  I think about it every single night and wonder if I could protect them all.  I’m pretty sure he doesn’t get that or understand the pressure I feel there.  But how can he really get me either? 

 

I want to get it, and I know he wants to get it but how does this happen?  We can’t switch places, but how can we better understand what the other is experiencing.

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Trish

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

Dear Trish,
sometimes the Internet is a godsend and sometimes it's frustrating. Right now, it's both as I would like to make eye contact with you as I say this.
I was saddened by the urgent tone in your letter. You sounded almost as though you "should"understand your husband's internal experience. Just like you sound like you feel the responsibility of "motivating" him as though that was even possible. So if you were in my office or sitting across from me at my kitchen table, I would ask you to just rest for a while while we talked. Don't try to fix anything or improve yourself, just rest. I'll tell you what I think and then we can explore what it means.
A Jungian analyst once said: "the divine child is always an orphan." I felt that the first time when I was in eighth grade and didn't make the baseball team. It was horribly important to me and my heart was broken, but my parents didn't seem to understand. And then when I had my accident, I felt different from everyone in my species. I felt so terribly alone in this world and I suffered. And over time, what changed was my suffering. I still feel alone in this world. Still an orphan. Your husband feels that way. So do you. The pain is not because you don't get it. The pain is because everyone thinks you should.

You cannot get it. You cannot understand his experience, nor can he understand yours. And if somehow you could just feel the sadness and loneliness of that truth, you might find yourself feeling closer to him.
Of course there is another factor with your husband. If he is anything like me, my wife and I were on two completely different trajectories when it came to compassion. She worked hard to understand me, but all I could do was feel guilty and scared about how hard she was working. I was too traumatized and preoccupied to be able to consider the internal experience of another person. Not then, anyway.
And now all these years later. Now that I am able to understand the emotions of others, I have made an important discovery. If your husband could label his emotions, he might use words like terror and fear grief rage hopelessness and aloneness. And if you were to label your emotions, you might have similar labels. Perhaps you could both add confusion about roles and rules and fear of the future. You see, what I have learned is that we may be all orphans, but when we can find a way to live with that truth, we find ourselves in an orphanage with kindred spirits.
I don't know where you land on the spiritual spectrum, but I believe deeply that all of us have something inside that is good and pure and uniquely our own. Buddhists might call it Buddha nature and more Western religions might call it the light of the divine. But no matter what it's called, it's in there -- still and quiet and wise and gentle loving.

Please take care
Dan

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Daniel Gottlieb Ph.D.
www.DrDanGottlieb.com

Rest for awhile and don’t try to fix anything.  Nobody has ever said that to me AP.  (It’s like our marriage is divided into 2 phases BP, before paralysis and AP, after paralysis.)  In fact, that notion honestly hasn’t occurred to me AP, or if and when it did, I simply ignored the thought.  From the moment my husband became a C3 quad and 100% dependant, I took on the role and responsibility of trying to fix and understand everything.  Of course, I’m mostly unsuccessful, but I try really hard anyway.  I put that role upon myself and everyday it is reinforced by others.  I’ll give you a few examples:

 

A couple of years ago I had surgery on my hand and wrist due to complications from my own injuries in the accident.  I had the surgery in the morning and left the hospital with my right arm in a cast and sling.  I made it home by the time the nurse left at 4:00 p.m. and then went right into care-giving mode.  The phone call I got that evening was.."Oh hi, you’re home…good.  How is he doing?  I hope you’re going to be able to get him up tomorrow.  It would be a shame for him to stay in bed.  He’ll get really depressed."

 

When people come over (notice I say people, but I really mean his family), I almost always get this litany of questions:  “Did you get him to the doctor this week?  Maybe you should get him back into counseling?  Take him out to dinner; he needs to get out more.  It will make him feel better.  Did you find a power soccer league for him to become involved in?  He always liked sports.  You have to find a way for him to get more involved with the kids.  Can you get him in the standing frame more?  He’ll be happier the more he can be on his feet.” 

 

It seems like nobody has any expectations for him but many for me.  Do I sound bitter?  I probably do in the written word, but honestly I am really just sad, weary, and a little hopeless and helpless with the situation some of the time.  In the beginning I was furious and angry about these expectations his family had for me, but now it has gone on so long, I might just be numb to it.  You might have guessed that they don’t help out much with his care.  He has a large family that lives nearby but they don’t “feel comfortable” doing any of his personal care.  I asked long ago and this was the response I got. 

 

As a spouse to a high level quad, I feel guilty that I really can’t fix it all.  I would like to give myself permission to stop trying to “get it” and “fix it” but that seems a hard task at the moment.  There are so many feelings to work through, but I rarely have the energy to begin the process.  My biggest hope is that someday we won’t look at our marriage as BP and AP.  Right now BP and AP seem like 2 completely different lifetimes.  Someday, maybe it will just be us and not BP and AP.

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Trish

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