Late Night Confessions: (Are Hope and Truth Compaitible?)

I have been so focused on thinking I can help save my son’s life that I am avoiding, perhaps evading, mine and his actual current lives.  I’m not getting my work done. I don’t eat well. I hardly get outside or exercise anymore.  I feel mentally exhausted and frustrated by the time evening rolls around and I lay awake most nights crying. Those dark, lonely hours, reveal the unbearable pain that hides in the shadow of hope during daylight.  Maybe reality is the opposite of hope?

Here’s the irony:  Most of my family and friends think I have finally recovered from recent troubled years. “The return of Dave,” we jokingly call it. But no. I just traded one addiction for another; one obsession for another; one form of escape for another.          

I think often of the times I spent with Cory before his diagnoses – all the adventures, dreams, hopes, plans, expectations, and happiness. Things were different then. Now it seems I always have the disease in the back of my mind; I have his eventual decline and death in the back of my mind. It won’t go away.

Here’s what hope led me to: I set up a website and a blog; made several Facebook pages and created a YouTube video I naively hoped would go “viral.” I created a Change.org petition to George Clooney pleading for him to watch the video and help. When my son recently answered an interview question choosing singer Katy Perry as one of three people he would have dinner with, I sent her fan club an email asking if she would actually have dinner with him and help the cause.  I tend to be an obsessive, compulsive extremist.  I keep trying to hit one out of the ballpark.  I feel desperate.

It doesn't help that I regret not spending more time with him than I did over the past 12 years; or that I now live 1,049 miles from him and only see him in photos and on Skype. (Website, YouTube, Facebook, Skype . . . I have an electronic relationship with my son. It's like watching a movie. I keep hoping for a happy ending.) 

I tried to get hold of Liza Minnelli. In 1985 she won a Golden Globe Award as best actress for her portrayal of Mary-Lou Weisman, the mother of a boy named Peter who died from Duchenne in 1980 at the age of 15-1/2. The movie, called “A Time to Live!,” was based on Mary-Lou’s  book, “Intensive Care: A Family Love Story.”  I contacted Mary-Lou, proposed the idea we get hold of Liza (they worked together and bonded on the movie set) and see if we could organize some sort of fundraiser around the book, the movie, Mary-Lou and, of course, Liza. Mary-Lou liked the idea and wrote Liza a note.  We never heard back.

I am desperate. And now I think of the movie, and the book (neither of which had a happy ending), and Peter, and Mary-Lou and other parents who lost their sons. Then it hits me: I am going to be one of those parents some day. Sometimes I feel insane.

Mary-Lou wrote a guest blog for The Cory Story, which I called “Raising Hopes: (For Pete’s Sake),” in which she wrote:   “The difference between us, and boys and their families affected by Duchenne today, is that today people can afford to have hope.”  Yes, it’s different than in Peter’s day:  Deflazacort has slowed the disease for Cory; treatments and cures seem “right around the corner” (or so I am told); clinical trials are underway, with promising results. (I use that line a lot when soliciting support. Sometimes I believe it.)  He's gotten heavy. He falls down sometimes.

One of the problems with hope is that I hang onto the notion that he might be okay. The cure will come just in time! Cory and I will someday be backpacking into remote, wild country together laughing about back when we thought he would end up losing all muscle use and dying young.  Thank you Mr. Clooney! Thank you Ms. Minnelli!

And then late at night it hits me. My son is going to end up dying.  How arrogant to think I will escape the fate of all the other parents who lost their wonderful, beautiful children whom they loved as much as I love Cory.   

Nobody is going to ride in on a white horse.

Perhaps hope is just an accepted and encouraged form of escape and denial.  I’m not sure I can face Duchenne -- I love my beautiful boy Cory too much to face reality.

But is that love? Am I being naive, arrogant and perhaps even selfish by not accepting reality? Are hope and truth compatible?

Views: 566

Comment

You need to be a member of PPMD Community to add comments!

Join PPMD Community

Comment by Cheri Gunvalson on May 22, 2012 at 9:46am

David,

I am sorry you are in such a place as it is so hard.  I believe our sons have a chance at a good life.  Is it the same as my other kids no but it is good.  If possible to focus on what can be done rather than what cannot be done.  Jacob our son with DMD will be 21 in October and is home for a month until he starts summer school at a different university.  It is great to have him home, I know he is getting his stretches and stander daily, weekly pt, meds on time, healthy eating, I get to see him daily etc.  But he is really ready to get back to living on his own (with PCA help) just like my other kids who have come home for the summer from college and can't wait to get back to school.  He has made plans for the future.  He is going to Portland in June with a buddy because he thinks he may want to live there someday as he heard there is a good mass tranportation system and great coffee houses.  No he won't be backpacking but honestly he'd rather be in a coffee house having conversations.  As all three of our "kids" now 23,20 and 17 are now adults and are completely different with different intrests, a figher jet engineer, a student who plans on be coming a therapist and is looking at a MSW instead of a PhD in Psych because its faster and he'd rather do therapy than testing and our daughter who is looking at starting college.  I share this perspective becasue  Jacob has asked of us it to make DMD as small of a piece of his life as possible.  Yes DMD is there but Jacob devotes as little time as possible on it so I help him by setting up his MD appts such as his yearly trip to Cincinattie Childrens next week.  Yes, I still worry but as Jacob teases me you know mom, Ben (the engineer son) is still playing Rugby and so maybe you need to worry about him instead this week.~Please take care and as my good friend tells me cut yourself some slack.

Comment by Angela Bourgeois on May 21, 2012 at 11:51am

David,

Diagnosis is heartbreaking, then you get hope and then heartbreak again, then maybe hope, then we all know how it ends - heartbreak.  It is so very hard to be happy with it always in the back of your mind, always staring you in the face.  It just sucks! I wish I had answers but truth is as our sons get older we just have to do the best we can - and it still sucks. 

Sometimes I have to get "away" from it all - not my son, but from all the DMD stuff - including Parent Project. Parent Project is a great resource and I don't know what I would do without it, but it can also be very depressing.  When I find I am crying every time I log on, I take a break from it.  We did a big fundraiser a few years ago (months and months of writing about DMD and prognosis) and it was one of the worst times of my life - begging for money to help my son live - I know some people can cope and even need that to cope, but I couldn't do it again.  It was too hard on me and on my family. 

Perhaps if you take a break you will start to feel better.  The reality doesn't change but it might be easier for you to cope if you are not dealing with it, spinning your wheels all the time.  It doesn't mean you have given up hope or that you can't continue to work toward a cure.  You just need a break from it all to take care of yourself, then when you feel better, you can start afresh with new ideas. 

Comment by Donna on May 21, 2012 at 10:48am

Hi David,  I am so sorry to hear you are in such a dark place right now.  This is not easy by any means.  I've seen some of this as well in my husband and daughter (15) since our son's diagnosis (4 years ago - Kyle now age 9).   I totally and completely understand how you can be feeling this way.  Acceptance is a hard thing to get to.  I "think" I have been there for a while now and I get up most days loving life.  I wouldn't trade my son for the world - even knowing what we now know.  There are no guarantees for any of us - I keep trying to tell my husband and daughter that.  Unfortunately the road map is laid out more for our sons.  Because of that, I try anyway, to make the best of each day - and don't get me wrong - not all days are norman rockwell days, but I can tell you, I don't want to have any regrets with the time that we do have together.  I don't want to regret being angry, don't want to regret being sad all the time, don't want to regret not making my kids world around them the best it can be - that's not any different than what I would hope for if my son did not have this disease.  Don't be afraid to get counseling either to help you get to the acceptance stage of this craziness.  That's tough too because you have to get the right one - so it may take a few tries.  Another thing I would suggest would be to try to find some time to get yourself physically healthy as well.  Dedicate time 4 - 5 days a week and get moving - work out, running, whatever you like to do - that is really good therapy as well.  AND, if you want try to make a difference - pick out a half marathon, full marathon, or adventure run for Run for Our Sons...  My husband and I did the Chicago Marathon for Run for Our Sons in 2009 and it was definitely good therapy...Just think of how you want Cory's dash, and your dash, to be... because it's not our birth, nor our death, that matters, it's the dash, the inbetween time that matters...

Comment by Andrea Cleary on May 21, 2012 at 10:25am

David,

I forgot to mention this:

The meditation teacher I just mentioned, he used the exact image you used (bird on the wire, under the moon) for one of his blogs.

A.

Comment by Andrea Cleary on May 21, 2012 at 10:23am

David,

I am so sorry you are caught up in this hellish confusion going around and around in your mind. But if you are reaching out because you know it can't go on, then I think you are ready for the next stage, whatever that is. 

I bet a lot of us have been where you are too, thinking that we are going to kick butt and take names in the Duchenne arena. And then when we have been beaten down and have no more energy in us, we crawl back to our corner of the world, empty and possibly bitter. Sometimes it just lasts an afternoon, sometimes months. So I want to thank you for your efforts, because though some are long-shots, if nobody tries, then they certainly won't ever happen.

Just imagine all the requests that George Clooney, Liza Minnelli and Katy Perry get, from kooks and sane yet desperate parents like us.

Maybe we should contact Matt Damon and Ben Affleck, who wrote Good Will Hunting as a college assignment. Let's write our own touching story. Let Hollywood come to us.

I don't remember their name, but there is a family in PPMD who's son has done an episode of Law and Order and I believe some other TV shows. Perhaps they have a contact for such endeavors. But in the mean time... 

Getting the word out about Duchenne can be done at the community level, with the schools, neighbors, shops around you, the folks who can see Cory, see his Father's love. Just making people around you aware.

I don't think you are in denial as much as in mourning, for the things that could have been (hiking,girls, etc), dreams that have died. Nothing that we think about in the future has happened yet, nor are they "a given". All there is is the NOW, and you have to find out how to be satisfied with that. Of course we all want a cure, but being content with our lives if they don't find one in time for our son, that is more important. This IS our one life.

Let's say they find a cure and you and Cory are out hiking or back country skiing, and there is a rock slide or an avalanche that causes Cory to be a quadrapalegic, instantly, like Christopher Reeve. What would you do then? How would it be different than today?

It may sound callous but from the moment we are born we are all dying. What of the still births, those parents who never got to see their child even smile, the babies born so disabled there is no recognition of true existance.

You have Cory right in front of you, be it in person or Skype for now. Yes, we will fight for them, we are closer to decent  treatment than we have ever been before, but we can't hang our hopes on a shooting start that may never come. That makes for a miserable life. Lots of these young guys are working thanks to computer technology, some are getting married, having satisfying relationships. It's a different life, but it's theirs.

David, I am trying to hit a home-run right now by trying to comfort you and by having all the answers. But I don't. I just know that I have become content with what we have been given to deal with, right now, right in front of me. And I wish the same for you.

May I suggest checking out mindful meditation for your questions about what is reality. It is helping me. I can even get you in contact with someone who could do this with you via Skype.

All the best David,

Andrea

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2018   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service