Pro-Active Coping with Craniocervical Fusion Surgery

January 5, 2014

A picture for people coping with Ehlers-Danlos or other chronic illness.

by Susan B Spitzer, PhD

Countdown My typical mode-of-operation when anticipating a surgery is to prepare my body for extra stress. For instance, when I was going to have brain surgery back in 2005 (VP shunt), I hired a private trainer. She helped me raise my suppressed blood pressure and heart rate through creatively safe exercises. This experience served me well as I went into that procedure with healthy vitals and then went on to enjoy the world on my recumbent tricycle. This time around, however, I am not able bodied enough to engage in any physical activity beyond some stretching on the floor. My droopy brains have become so bothersome that even taking a shower will set off symptoms of my brains’ lodging in my butt! So much for pursuing physical preparation for the craniocervical fusion I will undergo in three weeks. I may not be able to physically prepare for this surgery, but my psychological preparation, is another story. That, I can do! Foremost is the acceptance that, regardless whether the outcome is a success or failure, this surgery will create a turning point in my life that will determine all aspects of my future. Wow. Not too much pressure, huh? If, God willing, the outcome is good, I will be able to enjoy my life without being bedridden anymore. Others with brain drop who have had this same procedure have told me that the burning in arms and legs goes away, the nausea goes away, the double vision goes away, and even the tinnitus (ringing in ears) goes away. I won’t have to live with the fear that I might do something to trigger an acute attack. I can’t imagine living my life with normal activities like riding in a car or picking up a dropped ice cube from the floor. But even a good outcome can be stressful.  If I am able to resume most activities of a normal person, what will I do with my life? Will my new abilities cause me to have more interpersonal interactions? How will I handle that…I’ve been pretty much socially isolated for the past several years…will other people like me, or will I mess up? Oy. And what about my appearance? The wardrobe of a homebound, supine lady includes pajamas and slippers. If things go well, my morning rituals will likely include dilemmas about Dior vs Channel eye shadow. OMG…such pressure! Jeeze…right now my family and caregivers are fortunate if I bathe and brush my teeth. But I think I’m up for the difficulties that coincide with a good outcome. I am fortunate to have had many years of psychotherapy that has helped me to cope with normal life in healthy ways. I look forward to the challenges of the life that will come with a good outcome. And if the outcome is bad? Then my upcoming changes will include more social isolation, more inactivity, and more pain. It could be so bad that I may not even have the physical ability to implement a suicidal escape. It does not sound fun and, as difficult as the adjustment will be with a good outcome, I really don’t want to go through the changes that go along with a bad outcome. That is why I have chosen denial as my primary coping strategy for a bad outcome…my long-term plan is to quietly go insane and live in a fantasy world. So much for looking w-a-a-a-y ahead into the future. With my feet planted firmly on the ground (well, figuratively anyway), it is much more important to anticipate the emotional difficulties that I am bound to struggle with during my recovery period. Assuming a good outcome, I anticipate four stages of recovery:

It is the first two stages that I am emotionally preparing for at this time. For-sure there will be moments of loneliness, fear, frustration, and despair. How could those feelings not happen? I wouldn’t be normal if such emotional swings didn’t come. They can’t be avoided, but there are some things that can be done ahead of time to actively cope. One pro-active coping strategy that I have embraced is to assemble a Go-Bag. This is a bag (ok…it happens to be a Vera Bradley duffle bag) with items that will bring me emotional strength in an instant. I have gathered some of these items by myself, but the most powerful items are those that were given to me by others. So far, there are 11 items and counting! Go-Bag Items (random order):


1. Humor (from Hannah). My daughter, Hannah, and I frequently laugh our butts off at the stupidest humor…and there is nothing sillier or more stupid than Monty Python’s humor. Hannah bought this Black Knight doll for me several years ago and I cherish it as a reminder to step back and laugh.

2. Peace - from Sharri most precious friendships are the one’s grounded in the 1970’s at 4:20 after school. It is good to re-connect with old friends because in addition to being a reminder of comfortable times, it also opens the door for this new friend. Thank you Sharri for sending me this item, that will cause me to think of your timeless kindness, when I hold it.

3. Perseverance - from Dori. I have had several caregivers, but Dori emits an aura of patient perseverance.  The automobile tragedy that she managed to survive is a daily reminder of the personal qualities that can bring a person up from ashes.  When I hold this silly looking piece of cloth, I will remember such qualities that we all possess but seldom use.

4. Tallit - from Me I began a ritual in 2005 when I went through another scary surgery.  I bought myself tallit (a Jewish prayer shawl) and asked the surgeon to lay it over me after the procedure, so I could feel it when I woke up.  Over the years, this item has become a symbol of spiritual strength and a better sense of connection with my Jewish soul.  It has also stepped in for my beloved Rabbi, may he rest in peace, who always showed up in pre-op for any of my family members about to undergo a procedure.  When I hold this item, I will feel a sense of connection to my spiritual ancestors and progeny.

5. Knit Hat - from Community I received this knit hat has as a Christmas gift from our local, volunteer community.  It reminds me that I have an entire community behind me.  Although they may be quiet, they are there and when I hold this item, I will feel that extra sense of connection.

6. Sherbet - from Meredith Silly as it looks, this item was given to me many years ago by someone very special.  This person saw me through the darkest years of my life.  When we lose our physical health, we lose pieces of our lives.  But when we lose our mental health, we lose pieces of our soul.  I had lost my mental health, and Meredith stuck by and helped me to re-find my soul.  When I hold this item, I will be reminded that we can recover from almost anything.

7. Badge - from Nanny My grandmother was a woman of valor and I want to be just like her when I grow up.  She enjoyed volunteer hospital work for over 20 years, and I will too.  Her hospital ID badge and annual pins served more than identification…they were her badge of honor.  I will feel her strength when I hold this item.

8, Serenity - from Lisa Whenever I speak with my old friend from high school, I have a very serene sense of coming home.  When I hold this stone that she sent me, I will have the same feeling of speaking with her…serenity.

9. Purple - from Mother The color purple is said to possess healing qualities.  Clarity struck when my mother gave this purple necklace to me.  We have each savored this rich color for as long as I can remember, but never really made it’s connection to health until recently.  Jewish tradition invokes the mother’s name when praying for health.  This has to do with empathy for the relationship between mother and child.  When I hold this item, I will feel nurtured by a healing light.

10. Mi Shebeirach - from Susan Frequently, I have listened to this Hebrew song that prays for healing.  It evokes feelings of being nurtured, connected, and courageous.  Ironically, an old friend who shares my name, recently sent a link to this beautiful song.  I am in the process of loading this recording onto a mini mp3 player that any zombie can operate while heavily medicated.  I will feel soothed when I listen to this item.

11. Confidence - from Neil My inbox has been happy to hold well-wishes from old and new friends.  The impact of these messages is terrific.  A very special e-mail arrived recently that stands out in my heart.  Feelings of fatherly approval and confidence radiate whenever I re-read this e-mail from my old friend and mentor.  This printout will probably stimulate me to sit up straight when I hold it in my hands throughout recovery.

It truly does take a village to raise a child, and it takes a community to heal the ailing.  I hope that this post encourages pro-active coping in others who are on similar journeys.  I also hope it will encourage healthy people to reach out to those who are ailing.  It means a lot.

Until next time…!


My Brains are in My

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(c) Susan B Spitzer, PhD 2019