What Thanksgiving and Christmas Really Means to We Who Suffer

What Thanksgiving and Christmas Really Means to We Who Suffer

By Kerry Smith

Kerry Smith

Kerry Smith

Editor’s Note: Kerry Smith is a former minister, a professional artist, and has suffered with chronic pain for 14 years. He has lectured and written on the topic of chronic pain for several years. Here’s a link to his art studio website.

The sounds of laughter echo from the kitchen as the last bits of cranberry sauce and gravy are poured into the bowls. In the den, the sounds of the Thanksgiving Day Parade with singers and dancers and entertainers immerse the mood of the day. The kids run in and out of the back door playing football or bouncing on the trampoline. And for us, for we who suffer, what we hear and feel is anything but a joyous occasion. To top it off, we have yet another holiday just around the corner, one where the celebration of the coming of the Son of God into our sticky situations or of other kinds of celebrations during the month of December will occur and we will struggle to find any resolve for our pain. Santa Claus is not coming to give us release of pain. The Son of God will not be able to give us the miracle we seek. And we will not be able to experience the “Merriest of Christmas’s!” Welcome to the pain sufferers guide for celebrating holidays!

Please, if you think this is cynical and you do not suffer, don’t waste your breath with a lecture for such anger or frustration that I am espousing. This has now been 15 years of suffering with pain for me. This week alone will present me with yet another MRI and a nerve conduction study on my legs of which I am losing control of. Don’t get me wrong about my desire to celebrate. I have a beautiful family with a wife that loves me and a son and daughter that cherish me and I will do my damnedest to create a Christmas they can remember. At times, those people are the only ones carrying me in this insanity and I hurt knowing that in some way they feel helpless in this struggle. I love to hunt this time of year, but now I have to rely on the goodness of others and you and I both know that the road to hell is paved with good intentions. Our home has rotten wood on the exterior. The pain is chipping. The windows are cracked. Our wooden fence is rotting and falling down. Projects once started remain unfinished. Santa will not be coming to fix any of it.

There is not going to be the ending of a feel good story here because it is our story, the story of people who start hurting one day and spend the rest of their life in pain. There is no cure. Medicine which may give some relief is taken away without justification now by politicians unwilling to embrace our journey. Caretakers stop taking care of friends or loved ones because there is no happy ending to this fairy tale. They grow tired of hearing about our constant pain and stop asking the four word question that they really don’t want to know the answer of in “how are you doing?, unable to fully understand our situation and frankly, who blames them. This is not cancer unfortunately that at least has a chance for cure. Can you name someone who has been rescued from this hell-hole of pain? We have not been felled by a heart attack. No broken bone that has a cast. It is pain. It is long suffering, soul wrenching, unexplained, incurable pain. Share this with those who are fortunate enough to not have chronic pain. Expect nothing in response.

It is what it is.

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Authored by: Kerry Smith

There are 21 comments for this article
  1. Bruce at 3:39 am

    At least you still have your family, Kerry. All I’m left with is a cat to talk to. Nobody cares, and to say so doesn’t really even bother me. It is what it is, like you say. I don’t see how anything could be otherwise. If I was healthy, I wouldn’t want to be anywhere near this cr*p.

  2. Sandy Auriene Sullivan at 1:47 pm

    It isn’t just me who fears the holiday season? Rarely do I have enough money to get through a month just on regular bills. My two older kids are more forgiving as they’ve traveled this road with me. From healthy active mom to inactive and injured [repeatedly w/a genetic disorder].

    What Genetic disorder? Ehlers-Danlos Hypermobility type; something that researchers are only beginning to grasp as a precursor to ending up like moi. Ending up a CPP on medications to treat it.

    I found that it varies greatly in degree among my family, chronic pain requiring medications and medical intervention like injections [which ease so much burning pain in my neck but that’s another story] begins at different ages and due to injuries of various degrees + normal aging. In fact, my family has 4 generations *right now* that can be evaluated to help understand it before the patient ends up as screwed up as I am. [spinal collapse/bone spurs]

    The genetic disorder has now been found in my 13yr old daughter by an orthopedic surgeon at a children’s hospital. Since, my 23yr old son has it without medical intervention required; my brother too but he’s just been dx’ed with stage 4 cancer – again The odds are really against him this time.

    [Merry Christmas for me would be giving him 1oz of high quality CBD oil for intensive 3-8wks of treatment with it. It has a very good chance of putting him remission; again. Giving him the 5yrs instead of 6mos]

    My 76yr old mother has this genetic disorder too, she has been in therapy for neuropathic pain in her feet [absent diabetes] and like me has a lumbosacral nerve that gets compressed – but as I told her at 76yrs, age is more a factor and normal vs what Ive gone through for nearly 2 decades now and only 45yrs old but 5 x the pain my mother has now.

    My sister also has this genetic disorder; my ‘sister’ who 17yrs ago after my car accident; put me through hell and back. Tried to turn my young boys and parents against me, tried to involve the state because I was desperately seeking answers and all that in her naive, childless mind made me an addict and bad parent. Who just found out what chronic pain is all about.

    Yes, Im hella bitter about what she put me through. As one friend said, “karma maybe slow but her aim is true”

    Until we have more research on Ehlers-Danlos hypermobility type; this we will continue to have patients like me grasping at straws or taking their own life due to the pain and lack of awareness. My understanding is many dx’ed with Fibromyalgia may in fact be hypermobile themselves.

    The holidays for me are a dreaded extra chore. My favorite is Thanksgiving since no one stays home because they couldn’t afford to shop, didn’t have the energy to do it or the fog of pain and fatigue causes it to sneak up too fast for it to be completed in time. Thanksgiving is food/family/friends only. No extra stress, no hurt feelings, no forgetting that one person and/or having people who cannot afford to eat join you without the pressure on them to bring gifts/cards etc.
    Holidays are stressful by any measure for the healthiest. Wish I had that holiday spirit-bug. Merry holidays?!

  3. Cheree at 7:34 am

    Thank you for speaking honestly and from the heart—about the of truth and the reality of living with, and in chronic pain everyday. Believe me, I share your pain and frustration! You said it well, my friend. It breaks my heart to read comment after comment with the same message—why are the legitimate chronic pain sufferers being lumped into the same basket as serious drug users and heroin addicts??? Why are MY meds being reduced or taken away, when I am under the care of a physician??? I’ve followed the rules, I’m done the physical therapy, MRIs, CT scans, X-rays, blood tests—over and over again. But I am in still in chronic pain! I’m not saying there isn’t a sad problem with drug additction, but attacking the ones under doctor’s care, following all the rules, taking prescriptions as prescribed, not abusing our meds, but just trying to get through another day is just WRONG! Reading comment after comment about thoughts of ending it all, is absolutely heartbreaking!!! The “accidental” overdose issue that the lawmakers are claiming to trying to rectify—is literally making it worse! What can we do???

    Know my warmest thoughts and understanding go with all of you fellow sufferers today.

  4. Jean Price at 1:59 pm

    Not just the physical pain…but SO MUCH OTHER PAIN in this article and in the comments. I am truly overwhelmed by all this sadness andall the hurt, after reading this. I suppose it is a synopsis of what pain can do…as it limits life and sucks the joy out of things we used to relish doing, for ourselves and others! And I want to reach out and comfort each one of you…yet I can only commiserate…and say yes, it’s so hard to accept our personal realities of pain, everyday and more so during the holidays!

    For us, pain is NOW and the pain we see in our FUTURE. Plus we have the pain from the past…and that can drown us IF we bring it forward into the present. I WORK HARD TO REMEMBER THE PAIN FROM THE PAST IS GONE…over, done with…and I must leave it there. What does it matter that I have had pain for years, when it’s today’s pain I need to cope with in the present? The pain I have right now is more than enough to deal with…so I mentally shut the door on those years of pain that are past. AND LOCK IT!! And the future pain? Well, it can flatten me and defeat me, too…and it’s not even taken place yet!! So once again, I shut the door…knowing I will walk through that door tomorrow…and deal with what it’s bringing THEN! Because, again, TODAY’S PAIN is more than enough, and I am the only one who has control over what I think about! So, I choose to stay in the present. Of course, I peek in to those places, sometimes I even swing the door wide open… and I then I remember why I had them shut…and I have to renew my commitment to once again close those doors! My reward in doing this is pure survival….and even finding a little of today’s goodness despite living with pain, despite all that I’ve lost. Some days this takes more effort but it’s worth it!

    We all talk about people not understanding our pain and our needs. And I have wondered in the past WHY IS IT that I want others to understand my pain and it’s limits and awfulness…and I see so many others who want this too. But WHY, WHAT exactly would we gain from this? What would it change for us? I learned a process of soul searching that is me asking myself questions I can only answer using “I” language! It goes like this:

    I want others to understand my pain because I…
    It’s important to me that I (use above answer)…because I…..

    And you just keep doing this until you see the real WHY!

    So as an example…I could say…
    I want others to understand my pain because I…won’t feel so alone and judged then.
    And it important to me not to feel alone and judged because….I want them to know I need their help, that this is hard and it’s real!
    And it’s important that they know I need their help and not judge me because I….don’t want to have keep asking for help or being without it!
    And it’s important to me to not have to keep asking for it because I….well, I might not get it then because I have to ask for so much and I risk them saying no, especially if they judge me!a,

    So I may have just figured out it’s the need to not ask for help and to not have to run the risk of not getting what I ask for, along with being judged unfairly, that makes me want people to understand my pain. Some pretty uncontrollable goals! Besides, if I don’t ask clearly for what I need…I don’t have as good a chance of getting it…and this is something that’s also true for those without pain!!

    This is a just a simplified way of getting to know your own needs and also figure out what the core issue of some mental pain is because sometimes if we know this, we can choose to change our behavior and eliminate some of the extra “ripple” pain of physical pain…the mental, emotional, and even spiritual pain of life! For me, my needs at Christmas have definitely shrunk over the years! Christmas has become a time of internal reflection and a celebration of my faith, and whenever possible with my family. This year, I’m not able to go where I’d so love to go because I’m not travel worthy…and they can’t come to me. Yet I can find some goodness in a simplied version of sharing time with them using FaceTime and reaching out to those I love if even just to share a moment on the phone with them. And shed a few tears along the way! The homebaked goodies I loved to make…well that’s a big loss, yet plenty of other goodies are available through the mail…and as for shopping? Well, really my biggest gifts to give and receive can’t be bought anyway. With the years, traditions and celebration of holdidays always changes and eventually the torch passes to the younger generation. But with pain it often feels like it was TAKEN from us instead of just the natural process of giving it over. So Christmas is a time of grieving too. But really, it is for most people…as they think of those no longer present and miss those they can’t be with. So I think we are more normal than we think…we just have pain thrown into the mix, too. Bless you all, and I wish you heart peace and comfort and some of your personal best days during this season. May you find happy surprises in the smallest comforts and the love of family and friends, even if they don’t understand pain!

  5. Monica at 4:09 am

    I wish i could take each one of you and give you a hug, because pain is very lonely even if you have the best support family. It is lonely and misserable, and mosltly exhausting. I have been up since 2 am it is now 6am, i know no one wants to hear my woes, that i am in terrible pain laying along side my wonderful husband, crying in such pain, feeling alone, wondering how to get through another day. Pain meds do not cover even half of the pain. I also dont want to take anymore because i hate the mental fogginess. It is all a double edge sword, (-take more pain medicine then i have no motivation to do anything, but hey, my pain is better or dont take the medicine and the pain is so bad you cant sleep, or function as a human being. Total bed patient at that point. I cant think about living another day i though because the pain is so terrible.
    Now, for all of us with families, children and grandchildren, we will pretend we are happy, we will wake up and somehow dig down in the depth of our souls and pull out a ounce of strength that we didnt know we had only to be surprised to make another day. Somehow we may squeez a smile just so someone will want to talk to us, but no smiles are inside, it is fake happiness. I give you my hugs, because i know you need it as i need yours ♡

  6. connie at 9:56 pm

    Moira, someone hears and c cares. Gentle hugs

  7. Moira at 12:56 am

    I have a lot to say but it is not worth it.
    Nobody hears
    Moira

  8. Dooney at 8:45 pm

    I’m going on 15 years of chronic pain too, last four the worst due to another botched surgery, suffered nerve damage among other things. Just lost my job of 25 years, laid off 2 weeks ago. Everyone is giving me job leads, saying do this or that. I’M EXHAUSTED. The only reason I was still working was for the benefits and being the breadwinner. People just don’t understand how having pain everyday exhausts you emotionally and physically, in addition to just having the pain to start with! Just because I don’t cry everyday or look and act miserable doesn’t mean I don’t feel miserable. I like some of you will just do the best I can this holiday season.

  9. Judy at 6:37 pm

    I too have the “bah humbug” feeling about the holidays. They’ve become just another day of pain to get through. Nothing to celebrate….no merriment or good cheer. I remember the “good old days” before chronic pain took over my life…..I remember the holidays used to be fun, and meaningful. Now I just want them to be over quickly. Yes, it is what it is….and it sucks.

  10. Danny at 6:28 pm

    I just arrived home from an early Christmas gathering (due to travel & other family celebrations) with my in-laws. My wife had to leave early because of my pain and I feel so guilty. I must say that I am blessed with (mostly) understanding in-laws and a wife who’s put up with me for 20 years. (My pain has existed almost 26 years.) Just a horrible start to what should be a festive and exciting time of year. Now, I just want to get through New Year’s Day, so that the extra pressure is off. The daily pressure is difficult enough. So, I guess I’m trying to say that I totally understand where you’re coming from. I still hate to hear about the struggles of others, even though it helps me to realize that I’m not the only one who’s suffering.

  11. Geraldine at 4:19 pm

    I can see so much of my own story in practically all the prior posts.
    My wish for ALL of us in chronic, constant pain is we be allowed to continue whatever pharmaceutical regime has been helpful to us, and without govt. intrusion, restriction or mandate. Allow the legal use of cannabis in ALL 50 states, if the pain pt. so desires. As the mental & emotional pitfalls of being in unrelenting pain, have been known to improve with using natural, plant based alternative med.
    Hope everyone has the best, most memorable, least painful holiday season that ur body will allow.

  12. Michael G Langley, MD at 4:10 pm

    Dear FB,

    I feel guilty reading your letter. I am able to get some sleep and get relief about 85% of the time. It does little more that let me, occasionally, get off of the recliner. I still have nights where I can’t sleep. Having been a trained pain management specialist does allow me to be depressed about the poor care that, we, people are getting. I should have 100% control! But the relief of suffering is no longer my past colleagues drive for treating patients. They have forgotten the “caring” art of the practice of medicine.

  13. connie at 11:48 am

    You hit it on the head. I learned years ago that the only halfway honest answer to “how are you?” is to say “Still kicking just not very hard!” Christmas used to be a most happy, productive and special time of year. I even used to decorate the bathroom and the car. The last few years have been so sad not knowing if we will even set up a tree. Last year after paying $50 for a small tree it ended up never even being taken out of the net bag! Merry Christmas? Bah humbug. Thank you CDC !

  14. Barb Buenz at 8:40 am

    Good morning! I have been reading The National Pain Report for several months. I work for an organization that provides guided self-management services to those who suffer from chronic pain and other chronic conditions. Your articles provide great insight into the people we serve. Thank you for making this available.

  15. Maureen at 7:42 am

    Kerry, yes, somber but so true. As you said, ‘it is what it is’…words that I too often hear myself saying on the phone with friends and family when I sense that they are not interested in hearing ‘how I am REALLY doing?’.
    I get your every word.
    My mom passed away 4 yrs ago. I am the oldest of her 8 children.
    For many years Mom, in spite of her own horrible pain, threw a heck of a family Christmas luncheon with a fun Santa for her grandkids and a gift exchange amongst us all. She would spend a week or more in bed afterwards but she sacrificed her body to make it happen.
    Being the oldest, I’ve attempted to replicate it all the past 3 Christmas’, in order to keep the memory and tradition going (minus the Santa).
    It became more and more difficult for me to do each year and so this year I made a tough decision to NOT do it anymore 🙁
    I can still feel the agonizing pain for days afterwards that it put me in last year.
    I’m sad about that, but it comes down to Acceptance.
    My only child and my 2 grandsons (ages 4&6) live across the country, I’ve yet to meet the boys and haven’t seen my daughter in 6 yrs.
    It breaks my heart in half.
    I cannot travel due to pain, they cannot afford to come see me and so it is….
    Life in pain is tough. It is what it is…
    May we mke the best of it in any way we can.

  16. MG at 7:04 am

    I have suffered for twenty five years now and have to endure not only my pain but the pain of my children having no relatives other than their mother and I to celebrate with. both my family and my wife’s abandoned us long ago, but before doing so their greed had to inflict one last painful memory. No longer do friends stop by nor even call and we get a card or two if we are lucky. Since we do not have much money many of the kids around our area mock and belittle my children and they do not have many friends at all. Knowing that my disability and chronic pain has not only isolated myself it has also isolated my wife and children and that is just another layer of pain I must witness and that hurts me the most.

  17. Sandy M at 6:52 am

    Kerry. I can so identify with your story, only.we did not have our family gathered together for Thanksgiving. I didn’t even feel like getting out of bed, nor dressed because so many types of clothing touching me rips my.pain sky high. Like you. I have a wonderful family who understands my condition and my girls and their families did get together and then brought more than we could eat with desserts over for us. I miss the days of being host to my family who were always good to help me before I got so bad..I’m 69 years old now and try and do what I can, when I can. I can’t make plans, even my dentist knows I may have to cancel depending on how I wake up, which is usually the same old painful way. But I know I have to continue to push this body of pain in order for my family. I don’t want them to worry so smile and say I’m ok. I certainly understand the descriptions you gave of your home! Do you believe we have the same conditions here at our home, Including the fence! Both my husband and I had heart Stent surgery and he has upper back problems but continues to go to the store, pharmacy for what few.medications I have anymore, but I had a hemorrhagic stroke in the thalamus that left me with a pain syndrome that is hard to describe. It is constant. 24/7 pain that I have written about so many times here. and understand I’m not the only one in such pain
    My back surgery for the Scoliosis was real bad on me, it took 8 hours, my husband said longer than that, but it was progressing so fast that I was actually bedridden, but still trying. It really has its toll on me, along with the pain from my stroke that burns me all over, from left side of fave on my left side down, terrible sensations as I said are difficult to describe. Yes. Now the Christmas holidays are around the corner. We always have Christmas Eve here so the kids can enjoy their Christmas Day family (kids) day to play. They always come over later to show us some of their new technical gift’s and only granddaughter always has a new doll!.one of our girls teaches high school English and the older daughter is an accountant supervisor for the state. I’m so proud of them and their kids, we have 4 grandkids, who have never smoked, nor drank. The older boys have great jobs and are doing supet, while the 2 youngest 13 and 8 are honor roll, spelling contestant winners, as well as active in piano and guitar and….well…you know many other activities. Straight “A” kids too, they amaze me. So as an ex legal secretary for over 30 years, if I haven’t done much more, at least I can say I raised a great family of caring, loving, intelligent kids.much smarter than me! I know too, most of us can always say that about our families, although I pray for those who have nobody to care or help them. It has to be a really bad way to live and exist. So while I have so much to be thankful for, this everyday hell in pain isn’t life for me. I have to peck the keys on my phone with a stylist thing to type because my hands shake so bad and after close to 25 years now, it’s mainly because they want to take my Xanax away. I’m almost 70 years old, I don’t get why they want one opioid I have taken for over 10 years, along with the Xanax away from me. Doctors are afraid of losing their license and don’t want to write prescriptions since the government has told them what they can and cannot do when our doctors know we have never abused our med and in fact, try to go longer without taking a pill while in such distress. I hope the new administration. If.Obama doesn’t end up staying for some reason, will.lift this ridiculous rule. Junkies will still get their HIGHS, while those of us suffer in real, horrific pain. This taking away our med’s will.not help those who are the abusers, only we, the true person in pain.

    Thanks to all who contribute to this forum, it helps me to know I’m not alone and especially the truly, caring. wonderful, understanding doctors who write to let us know they understand our pain so much! We love all.of you!

  18. Donna Rubinetti at 5:48 am

    This statement so eloquently describes what I, and many us, are feeling. This constant pain that is quickly spreading is breaking me. The holdays which I used to love are now heartbreaking for me. I need an end or relief of this suffering.

  19. F.B. at 4:29 am

    I hear you, Kerry. I remember those long, hard holidays, somehow trying not to bring loved ones down, fending off others who drained me, wishing for anything other than pity. It was exhausting. Now I have no family still living and a couple friends left who “check on me” but have grown tired of loving me. I’m alone and I’m terrified of things getting worse for all of us. I was a psychologist. I helped people. Now I don’t know how to help myself. I feel everyday I’m getting closer to putting an end to my suffering. Why did they do this to us? We are being asked to write politicians, stand up and make our voices heard, but my pain leads to fatigue and many days I can barely get out of bed. Why won’t the ACLU help us? I’ve never been so alone and so scared. I pray every night that I won’t wake up. Just six months ago, before my meds were reduced, I was active–bad days were few. It’s the height of cruelty, it’s torture, knowing what works well for me, having had excellent pain control from meds prescribed by a legitimate specialist, meds I never abused or misused in any way. If/when I can’t bear it anymore, I plan to leave a note that explicitly explains why I had to take ending my suffering into my own hands. I hope someone will read it and understand I could’ve had a lot more time, to do some good in the world. Bless you, Kerry, for not mincing words. And bless all of you who are struggling & suffering. I would gladly be the only one in this horrific predicament if somehow I could make that happen. Thanks to everyone for sharing your stories.

  20. Jeannah at 3:12 am

    ***Hugzzzzzz*** I feel ya! and I’m sorry! and hope daily for lessening of our pain.

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