Anticipation: The Waiting Game

Anticipation: The Waiting Game

Whenever a potentially life-altering event looms, we tend to find that often overwhelming and all-encompassing anxiety can accompany the very anticipation of the event. Whether it is waiting for an upcoming surgery, a move to a new location, the birth of a child, a wedding, a death, or even a child going off to college, a natural human reaction is for anxiety to penetrate our soul and dominate our emotional life. Yet, when the day of that event arrives, I find the beginning of a release of the emotional tension of my very apprehension of the event. I tend to feel as prepared as I can to confront both the event and my fears of the possible changes to my life. The anticipation tends to be harder to face than dealing with the change.

I have had twenty-four surgeries. While I do believe that we should look to surgical options as one of the last desirable remedies, I would not have gotten out of the four years in a wheelchair, being able to go from taking steps in to actually walking again, able to read, drive a car again and most importantly, have life continue without these surgeries—events that were physically and emotionally demanding on both me and my husband. I have had numerous well-intended stated comments suggesting that one should only resort to surgery in extreme life-threatening situations, if even at all. While desirable, this has not been my reality living with Ehlers-Danlos Syndrome. Had it not been for these surgeries, I would not even be alive after having numerous catatonic episodes, not being able to breathe, respond or walk. So, I chose life, turning to what turned out to be life-changing surgeries. I was careful to be sure I was in the correct surgical hands. However, the anxiety brought on wondering what the process will bring on is overwhelming. The recovery is isolating and painful but it has a purpose, unlike the extreme emotional discomfort which can dominate the process of anticipating the surgery. The best day in the process for me emotionally is the day it all starts to move forward. Those days of waiting tend to be just miserable.

That same feeling of wondering what life will be like came as each of our four sons moved on in life and went off to college. As a parent who adored having her children part of her daily life, the anxiety crept into my soul, wondering if I could be as happy and productive without our sons home with us. The worst was the day we dropped off our third son in VA, we were aware that the distance would inevitably limit our direct contact with our son, perhaps permanently. My husband and I said our goodbyes, got into the car and started driving home, both in tears. And then, we would soon receive our first call from our son already expressing his thrill to be there. So upon graduation, when he was accepted to study in Egypt, we understood his excitement and passion and were better able to accept and move forward with our lives, not feeling lost without him. But again, the anxiety brought on first was worse than having the inevitable change happening.

And then there is the anxiety of a huge move in life which we just completed last week. After over thirty-six years on our farm, the anxiety of downsizing was just overwhelming. Along with that was the reality that this would most likely be our final home. Facing your mortality can be overwhelming. We were confronted with the challenge of our own possessions and a great deal of unwanted “stuff” left by our adult children along with cleaning out a small bar. We worked away on throwing and giving away items. In time, we were able to reduce our material possessions to only that which was needed but that anxiety of wondering what life would be like with a new home, different surroundings and moving away from our dear neighbors, our memories, and even the organic garden that we loved and ate from year-round was overwhelming. What were we doing? Yet, in our hearts, we knew it needed to be done to keep me safe with my two incurable conditions. My husband loved the farm work but was ready to slow life down and I couldn’t be much help. But that anxiety brought on was as intense as we have ever experienced. But then, all fell into place and the move and transition happened. Someone asked me how long it took to feel at home in our new place and the answer was literally “the next morning” we awoke to feel home again. The relief of having it over was amazing and so comforting. Again, it was the anticipation before that was much worse than being in “action mode” of doing what had to be done.

No matter what comes into our lives, we all go through times of having to cope with the anxiety of anticipation and the unknown. We need to hold on to hope that whatever we are facing will calm as we activate and take it on, instead of thinking about it. We somehow find our ways of coping and having no choice but to face what is next.

May life be kind to you,

Ellen Lenox Smith

Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.

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Authored by: Ellen Lenox Smith

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/

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Claudia

Well that is very true .I stay away from toxic people most calls I get is for someone’s personal gain Jobs ECT help w legal battles may 2 actully call to say hey how are you I am a WARRIOR ..BUT I STAY AWAY FROM STRES ALSO ANGRY PPL .. I WONT BE THE SHRINK GET YOUR OWN ..OK MR.STATES I DONT NEED ONE .YOU ALSO AVOID YOUR PROBLEM S BY FOCUSING ON OTHERS PLEASE DONT DO THAT DO YOU 1ST AND FOREMOST.. SO MOST OF THE TIME I SHUT MY PHONE OFF ..DONT GET ME WRONG I WILL HELP ANYONE .. NOT TODAY I AM WHACKED W MY BACK SO I CANT SAVE THE 🌎 I AM TRYING TO SAVE MYSELF. THANK YOU ALL..

FST

Well here we go around the maypole again. Do these endless essays about the same thing with the endless same comments really do anyone any good? Maybe for some of you. They worked for me too, for a couple of years. But I’m seeing the same words from the same people about the same thing (myself included) ad infinitum ad nauseum. And still nothing changes. Have our goals ever been clearly stated?

What are your representatives telling you? “Thanks for contacting my office.” And recently, the Surgeon General chimed in, years later. He (or his predecessor) should have been on this eight years ago.

I’ve lost the will to fight. I’m too old, too jaded; most of all too pained. Repeatedly going in circles—therefore I’m ineffective and those like me need to move out of the way.

Take good care. I’m unsubscribing. Thanks for your participation in what we tried to do. Suboxone, here I come. Throwing in the towel.

Sharri McMillian

Ellen,
So well written. I’m facing my 20th surgery next week. This one is sinus surgery. I have lupus and major medical issues. I’ve had 7 ortho surgeries in the last few years due to a fall and breaking both my legs. Still spend part of the time in the wheelchair. We are currently going through the downsizing and getting rid of stuff. So many memories. But you move on!! Wishing you all the best with your move. No one can take away or memories!! Especially our kids. Hugs

Dear Mrs. Smith, since you’ve had enormous amount of surgeries how do you go about finding what you call the correct surgeon? What is it that tells you that that surgeon is the best? Is there any tips that you can give us when things do not go well after surgery to respond to your surgeon so they would listen? So many surgeries it seems like you would have additional insights on picking a surgeon and just basic tips you know when things don’t go as planned. I am on the same road that you and your spouse are on. Realizing that you can no longer maintain what you have BC of health issues nor the income to hire it out to be done. I don’t know how you don’t feel like you’re always in anxiety with your health issues just to live as normal as possible with so many health issues that seemed to block your every choice. I just had hip surgery and supposed to have additional surgeries on other areas. But the healing has not turned out due to inflamed tendon as far as I know that’s what it is BC that’s what therapist said. From the doctors all I received was percentages who got better or stayed the same and even patient blaming as in labeling is fibro / you’re one of those that never gets better. BC of this I do not want to continue with the future surgeries even though they’re needed. I feel so insulted and tremendous anxiety. How can one get better if the Physicians don’t listen. Two years ago I could have already been in the grave BC 6 physician some I seen twice did not listen , took 4 months with both legs severely swollen unable to get around in severe pain from blood clots in leg. How do you get a physician to take your complaints seriously? You probably have a treasure Trove of information. So sorry your life is the way it is. May your future be much brighter. Thank you for any suggestions.

Debbie Gray

Great article! Anticipation…Anxiety, thereof! Thank you!

Michael Kastner

Ellen – you are an inspiration indeed and make me realize so much about being a Chronic Pain patient, the struggles we all face, etc. I’ve wondered if I have the strength you have to survive all you have survived. But know that until something happens to “us” we never know. We humans are stronger than we think and with people like you who speak out giving others hope I believe “we” gain strength.
I applaud you, your work, your progress and you honestly and willingness to share
You give me hope when I have no more. You give me strength when I give up. You inspire and I really admire you
My prayers for you are to be as healthy as you can be and certainly happy
Ellen, thanks again for helping us all. I know many appreciate you as I do. God Bless you and yours
Michael KASTNER
Norther Coast of California

becky

Ellen, I would agree. To me, top of the list is a my child to go thru a surgery, then me for a surgery only because of not being able take care of her, and who would help me or her.
There is not enough awareness for hypermobile EDS. My daughter has that and the EDS classic.
Put Lyme and co-infections on top, little RMSF in there too..
Add a sprinkle of muscles that cant get strong no matter what. They just dont. No idea why. But for her to try to do something like exercise for legs it would be screaming from her and yes screaming pain and blackout. Just not possible.
If she could get proper pain relief long enough period of time to try to walk and see if she can maybe take care of herself a bit, that’d be great.
As we sadly know, she cant get pain relief due to the junkies and inept doctors.
The two surgeries she had required specific pain medication and higher continuous amounts, which in the end were not that high for her but some one with a normal threshold yes would have been plenty.
So here she is, suffering 24×7, 10 years now, with pain of all types. Now they want me to take her to D.C. for upright MRI and John’s Hopkins for help. I myself have fatigue issues from genetics and heavy chemo and to travel her , well she cant sit in a car for very long and it is so very hard on me so drive for long. Took me 4 days to get her to see Dr Sam Donta for the Lyme up in Mass. God bless him all he did for Lyme. And we dont know if the Lyme is even gone. Seems like a relapse here with brain thinking and weight loss. The bone swelling has never ever been figured out. You are so blessed Ellen to have a husband and 3 sons. I am sorry for all your surgeries. Best wishes hope you get proper pain relief. Prayers

Lindsey

This was so meaningful to me and so helpful. My surgery is right around the corner and my emotions are all over the map; thinking I am not going to survive this surgery. I need to get these thoughts out of my head, and what you wrote has just helped me immensely. Thank you!

James McCay

Dear Ellen,

You are my hero!
You are a wonderfully calm person (when helping us) which in turn calms us down. I can’t thank you enough for that. As far as I’ve come over the last 16-years of being in Chronic Intractable Pain, I still have an awful lot to do working on lowering my anxiety. Having General Anxiety Disorder doesn’t help either, nor does the fact that drug companies are being bought out by OTHER drug companies in record numbers over the last couple of years. Of course higher anxiety = increased PAIN!

Teva was the only Generic brand of Clonazepam that helped my anxiety (and caused NO euphoria or “high”). I’ve been taking Teva for 23-years now! In the rare case that I had to use any other brand, it barely worked.
For those not aware; Teva WAS the company that bought out other drug companies since 1935.

So when Teva was bought out 1st by a small drug company (can’t remember the name) I was in shock, and very scared! My worst fear was realized; this small drug company changed the formula which was posted on their website with the change date (which is the WORST THING with Hyperthymusism) and I lost my true Teva Clonazepam formula which is the only one that worked right. With my XL (over functioning) Thymus Gland I had my whole life- got far worse when my MG became “Advanced” in 2009, even a change in non-active ingredients would cause a med to stop working. THIS IS SO AWFUL!

But then Actavis bought everything of Teva’s that this small drug company bought (and new Teva formula). So I called Actavis regarding the Teva formula change that was posted (and I saved that page on my computer as PROOF). They called back and said “The Teva formula was never changed.”. So why doesn’t it work half as well as it did when it was made by the ORIGINAL Teva?
I always try to have a positive attitude with a new Generic med (placebo effect) to no avail.
Now there’s TWO different Actavis Teva formulas, and neither work as well as the original Teva???

Jeaneen Stephansky

Thank you Ellen. My husband and I just moved across the state of Michigan to be near kids and grandkids and better health care. And you so capture how difficult anticipation can be. May your new life be kind to you. Jeaneen Stephansky

Glen

Let’s anticipate some good news about getting drug restrictions lifted.

Cakes

It seems that you were careful to be in the hands of good doctors; that is why 24 surgeries wemt well.
It is like saying to me who had one ome life altering one; that I was not careful to find a good doctor!

Are you kidding?
Please, it is like waking up the second time in more pain than I started!