FRIENDSHIP CHANGES?

Another question for anyone out there.  Have you experienced a change of friends/friendships over time since your injury or illness?  I'm noticing changes here and am trying to pay attention to whether I'm isolating myself because I am feeling really depressed lately and don't care to be around others more than I have to (and who wants to be around someone who is down anyway?) or if they are just going through the normal changes over time.  It seems that my closest friends are moving on with their lives and I'm an outside observer. 

BTW - Trish & Dr. Dan, hope your webchat tomorrow goes well and speaks to those out there who may feel so very alone with the challenges and rewards of being in a caregiving role.  

Questions for this week for Dr. Dan and others:

As I've mentioned before, I have so many questions - new ones everyday - and am looking for answers from anyone with even partially similar circumstance.  I'm a 59 year old female quad with C5-7 injury and an additional brachial plexsus injury (seriously limits function of left hand) three and a half years post injury.  Anyone with answers you would share, please respond. 

1)  How much caregiving do you receive daily, from whom, and for what issues?

2)  Do you drive and, if so, alone and how often?

3)  Do you travel alone or with a caregiver?

4)  If you travel, how do you manage your bowel program while you are gone?  Do you have help with this or do your own program?

5)  Do you have a regular routine daily and if you travel, how does your routine vary or how do you keep your routine the same regardless of where you are?

6)  How much, how often, and what kind of exercise or stretching do you do? 

7)  Do you manage your own medications - set-up, ordering, administration?

8)  Do you have help with housekeeping, laundry, repairs, meal preparation, shopping, pet care, and, if so, how often?

9)  Are decisions regarding your care, living situation, major purchases made by yourself, someone else, or with consultation and help from others?

Thank you in advance for your responses!  

My comments from a C3-C4 complete perspective and also a couple of new questions:

1) How much caregiving do you receive daily, from whom, and for what issues?

Approximately 50 hrs a week.  From agency LPNs or RNs.  For all issues. 

2) Do you drive and, if so, alone and how often?  NO

3) Do you travel alone or with a caregiver?  We have not traveled since the accident.  Mostly because I am too afraid to take care of my husband and kids away from home.  I envision too many things going wrong.  If we ever did, I would take a caregiver.

4) If you travel, how do you manage your bowel program while you are gone?  Do you have help with this ordo your own program?N/A

5) Do you have a regular routine daily and if you travel, how does your routine vary or how do you keep your routine the same regardless of where you are?  We have a very strict daily routine out of necessity.  That is what happens when you have hired caregivers scheduled for only certain hours.  If they are scheduled to come at a certain time for the bp then you do the bp then whether you want to or not. 

6) How much, how often,and what kind of exercise or stretching do you do?  ROM daily and standing frame for about an hour at a time whenever we can fit it in.

7) Do you manage your own medications - set-up,ordering, administration?  Nurses and I set them up and administer.  My husband orders his own stuff either through the local pharmacy or his mail order Rx plan.  I pick them up for him.

8) Do you have help with housekeeping, laundry, repairs, meal preparation, shopping, pet care,and, if so, how often?  I am the ?hired? help for all of that with the exception that we have housekeeping every 2 weeks.

9) Are decisions regarding your care, living situation, major purchases made by yourself, someone else, or with consultation and help from others?  Generally, we make these kinds of decision together.  My husband also suffered a TBI and has some short term memory loss and lacks motivation some of the time.  I kind of give him suggestions and put it on his computer to do list and often he will take care of stuff from that.

More questions for Dr. Dan or anyone else.

1. If your marriage ended after SCI, do you think it was because of the SCI or it might have happened anyway?


2. Do you think it is appropriate to ever involve your children in your SCI care?  If so at what age and to what extent?

Thanks, Trish.  I'm treading water a bit trying to find out what is "normal" for others in my same situation.  Seems like a never ending process and while I have so much to be thankful for, the blessings don't really change the searching.  I doubt that there is any norm - that each individual comes to their own definition eventually. 

Wish I could join the discussion tomorrow, but will be on the road again trying to have the plan "B" reversed or changed to plan "C" conversions for my SUV.  I spent four days last week out of town attempting to get the conversion I need to drive from my chair.  I have about worn this chair out using it as my primary means of transportation for more than 3 years.  As a result, my wheelchair's precise turning capability does not work well enough with the driver side automatic lockdown.

Last week was a major challenge and most of the questions asked were as a result of some portion of the trip or the quiet thinking time during the drive there and back.  I traveled alone for the first time since my accident - a 3 1/2 hour drive into parts of this state that I had never visited.  I'm looking at the experience as a whole to see what I learned from the trip.  Tomorrow will only be a day trip to the same mobility shop and back home.  The weather will be good - kind of cool (60s) and sunny - a welcome break from the rain, storms, and tornadoes that will return on Wednesday.

My daughter slept through a tornado that touched down less than a mile from our home while I was gone last week.  We also have more than 20 cases of swine flu in our tiny community that caused school and public event closings just before I left on last week's adventure.  Maybe the homefront will be quiet this time.    

Ratherbeflying~ I think we each set our own new "normal" and as we age our normal changes.  What I needed 19 years ago and what I need today are dramatically different.  It takes patience, a willingness to explore, investigate and be flexible in your needs. I have found that thinking outside of the box works best.

Keep asking, it does eventually feel less overwhelming and all consuming.

I also wonder many times what is the norm or is this normal.  I have a couple of questions regarding this that I really want to pose to Dan, but I haven?t yet.  I think I am too afraid he will say ?Good God woman, that isn?t normal.?  So I?ll keep quiet for now.  I guess we all just want to be normal.

For those of you who haven't read Tuesdays with Morrie, it's about a man who is dying of ALS and being interviewed weekly by his prot?g?, Mitch.  At one point in the interview Morrie blurts out anger and indignation: "my God, one day someone will have to wipe my ass!"

My immediate reaction was "you'll get over it".  I remember having that same sense of outrage and indignation back in the beginning.  Now, it's just my life.  No big thing, really.  And that's not because I am particularly resilient, that's because that's what we do.  Those of us who live, adapt.  The ego gets in the way sometimes and becomes indignant and angry.  But after while if the ego can get quiet, we adapt.  We might not find joy, but we stop clenching our fists at the gods or the institutions or whatever.

When I was commuting to work, I would leave a half-hour early so I could sit in front of my favorite lake and meditate.  Like most lakes, it was beautiful everything about it spoke of peace.  One day, someone threw a tire in the middle of the lake and half of it was sticking out. I was furious.  For weeks every time I stopped at the lake, I focused on the tire and became angry again.  And after while, my focus widened and I began to see the whole lake again.  One day, a year later, I noticed that the tire was now covered in moss.  I am not a botanist, but it looks like the lake was doing the same thing I was doing, making the tire part of the picture rather than fighting against it.
Nature is so much smarter than we are.  I think it's about the ego thing.

Trish-411:

Do you think it is appropriate to ever involve your children in your SCI care?  If so at what age and to what extent?

Dear Norma,
our stories are almost identical.  My children were small when I had my accident 30 years ago.  And I recall figuring out with my girls how to get in there elementary school for the first conference.  And now my grandson is trying to figure out how I can get on the beach with him!
My daughters are in their mid-30s and both have scars from what they have lived with.  But they have lived with more than just quadriplegia and divorce, their mother had malignant melanoma when they were infants and she became severely depressed thereafter, and lots of other stuff.  So they have their scars and they are both a little weird in their own ways, but they are beautiful women in every sense.  In their own way, they're both devoted to making the world a better place.  Their level of compassion and sensitivity is extraordinary and I am so deeply honored to be their father.
Norma, there is a new concept called: "posttraumatic growth".  And what we are learning from this emerging research is that although your story and mine are wonderful and life affirming, they are not unique.  How many parents of children born with disabilities have said that although they and their children struggle with the difficult issues, what has happened to them has made them better, more loving and compassionate people.

Some think we should all keep in mind.  Posttraumatic growth.

Nice meeting you Norma!

To follow up on my own post, I'd like to have a discussion about this concept of posttraumatic growth.  This is not the opposite of posttraumatic stress and most of us have experienced both.  So for all of our sakes, I invite you to take a clear minded view of the trauma you have left with and described the impact it's had on your life -- the good news and the bad news.

Should open up an interesting discussion about what's happened to us and what it means

The way I can relate to this concept of post traumatic growth is through my first marriage.  I married when I was 25.  A year after our marriage, my husband was diagnosed with colon cancer.  After several surgeries and 2 different rounds of chemotherapy, he died 9 months after his diagnosis.  I sat in a hospital room for 48 straight hours and watched my husband die.  It wasn?t a peaceful experience because my gut told me we were both way too young to experience this.

The only way I can put it is that I feel enhanced from the experience although I can?t say I am grateful that my husband died.  Of course not immediately, but over the months and years, I think his death allowed me to have greater compassion for others, certainly people with illnesses.  It also gave me an intense appreciation of marriage.  I realize that marriage is so precious and can easily be lost.  I think I also experienced a certain amount of emotional maturity I don?t think I would have gained any other way at such a young age.  My husband?s funeral was only the second funeral I had ever attended.  Being a widow while in my twenties had a way of shifting my priorities and values.  The little things most 20 somethings complain about didn?t matter at all to me.

Today I feel blessed for what I learned from this experience with my first husband.  I think that experience has given me some of what I need today to survive my current husband?s SCI.  And maybe right now that is what I am wondering?will I find growth in this experience too?

In the beginning of SCI, as a spouse you are just in survival mode.  There are so many things that have to be done and you just do them.  In the beginning you think things might change, you are hopeful that a cure is just around the corner but reality slowly sinks in that this is as good as it gets. After several years, the question comes, can I and am I willing to do this for the rest of my life and what growth is required for this new kind of marriage? 

I think I come off here as a sniveling, hand-wringing, neurotic, caregiver wife.  But really I think I am just searching for a positive change that can come from these struggles.  This searching causes a lot of questions that I tend to post here.  I guess I have gone with the true intent of the forum On Healing.  If there was a forum On love, On joy, or On laughter I would have a lot to post there too.  That is the good news.

The bad news is that both of these experiences have taught me that life is very fragile.  It doesn?t happen to someone else?it happens to me.  That thought has made me more cautious, a little over protective, and yes perhaps slightly neurotic.  With good there is always the bad.  Sometimes I just don?t know how much more growth I can stand.  

What incredible thoughtful and deeply moving posts.  I feel honored to be part of this process and closer to those who have opened their hearts and taught us all more about what it means to be human.
My story:
when I was in seventh grade I learned about psychology and knew that's what I had to do.  I prayed and said I would do whatever it took to be a really good psychotherapist.  By seventh grade teacher who I idolized believed in me and introduced me to psychology.  Three months later, he molested me.  Lesson 1 -- child abuse
Learning disabilities, mild depression and other stuff lead to school failure.  Flunked out of college my freshman year.  Lesson two -- learning disabilities and low self-esteem.

Get married to a wonderful woman and have a baby two years later, another baby the next year and the next year she gets diagnosed with a life-threatening melanoma and a year of chemotherapy.  Lesson 3 -- being a caretaker

three years later she develops multiple sclerosis.  Not sure what that lesson was!

Six months after that I become a quadriplegic.  Several lessons about helplessness and vulnerability and letting go facing death and facing life and facing self-loathing.

10 years later My wife leaves me.  Lessons on divorce

same time my daughters go to college.  One falls apart and begins to self-destruct.  Lessons on help and helplessness with children (everyone is okay now)

wife dies -- and you know that lesson.

Multiple illness facing death -- the big lesson.
That lesson gets reinforced now that I "celebrate" 30 years of quadriplegia as my body starts to show symptoms that no one can explain.  The big lesson.

So my wish came true.  All of these lessons turned me into a pretty good psychotherapist.  A happy one anyway.

I've learned about love and how accessible it really is.  And the more I love, the more easily I love.  Some people (many people) love me back, but that really doesn't matter either way I'm filled with love.
And gratitude for all of the emotional and spiritual wealth I've enjoyed.

I'll conclude with the dream I had several months ago.

I was on a subway with several people and there was the angel of death.  Same picture we all have -- malnourished Darth Vader with a sickle.  All the other people were scared.  I wasn't.  At the next stop, they all ran off the subway.  I didn't.  He looked at me and pointed a finger and said: "January".  And then I woke up.

I wonder if he was right.  And I wonder if maybe it's this January.  And if so, this summer might be my last.  And because of that it hass been the best summer I've ever had. And this posting feels open and rich and intimate. And this morning's bowl of cereal was especially good because I love summer fruit and I knew that would be ending soon one way or the other.

.Today, I'm not afraid of dying.  I am afraid of not living.  And all of those lessons have taught me, if nothing else, love better and live consciously.
Take care

Dear Randi's friend,

so like you, I would love to find a person to love romantically.  And like you, I would like to find sex and caring and all that stuff. And as long as we are one thing, I would also like to be able to make love like I did before the accident!

All worry is about the future.  So you have painted a picture of special people loving relationships and making love and now you fear that you will not have that picture.  A friend of mine had a traumatic childhood.  And like you, she also had a picture of what she thought she needed.  And she went through her life comparing her relationships, her children, her in-laws and everything to the picture she had in her head.  When I look at her life objectively, it looks pretty good to me.  Lots of people have loved her, she's had a good career and has wonderful children.  But she is so disappointed in her life because nothing ever fit that picture.  The problem wasn't her life, it was the picture.

I live with longing also.  We all do.  It's not a call to action and it's not a need we cannot live without, it's simply a longing for something we don't have at this moment.  But there is another moment coming right around the corner and it could be Heaven, could be hell or, most likely, something in the middle.

I wish your dreams would come true and I wish you were no longer afraid of you nightmare.  And most of all, I wish you happiness.