Walking Through The Day With a Pain Warrior


This is not just a story about me, but a story that many pain warriors live through on a daily basis. I know because I talk to many of them often.  Much of this is “our story”. …..I awaken each day; the first thing that I do is cry inside of my head. My body lay still too long.  Four hours is too long! I feel pain and don’t want to get up, or move because I know it will hurt. I’m so tired of the pain. I lay there and contemplate rising to my feet.  I hear my husband call my name.  He always says “Hello my Love, Good Morning! Time to rise and shine!”  He tells our Kitty, Luna, to come and get me. She always listens to him and she enters our bedroom and meows for me to get on my feet. Still lying there, I think about the day ahead and wonder if it will be a busy day?  Will it be one in which I have to do a few things? Or will it be a day that I can be a bit quiet?

After 40 minutes has passed from the time I took my medication, I attempt to get up.  First I sit up and I feel the pain in my back. The Degenerative disc disease, Scoliosis, Spondylitis and multiple herniated and bulging discs, make it almost an impossible feat. The medication does help. It takes the pain down from a 9 to about a 5; and I finally get up.  But then there’s the stairs to tackle. I hold onto the rail and then I lean on the wall. I fumble my way down the stairs, as my cat scampers past me, ready for her cuddles on my way to the kitchen. First, I sit on the ottoman and pet her for a few moments and then it’s time for breakfast. My husband has already made the tea and has my toast ready to go.

He goes to work and I go to my chair, my recliner. In my spot, there is a pillow and a blanket and a settle in for a look on the computer.  What fantastic things have happened overnight on Facebook, Twitter and Instagram? I answer a few questions, maybe I help a few people in my support groups? People always volunteer to help me with my groups because they are becoming large for one person to handle on a daily basis. People mean well, but they are also in pain and have much going on in their lives.  Eventually they stop helping and I’m alone again.  I don’t want to give up, because some people just need someone to listen, anyone.  I like being that person. I want to help and do something of value with my life.

Maybe after awhile at the computer, I will either write a blog post, an article for the National Pain Report; or maybe I’ll sign a song that day.  I love the beauty of ASL and the way the emotions come out of my body, hands and face. I can feel something other than pain. Until I’m finished; and then the pain is worse.  I have to rest and take more medications. My husband comes home for lunch because he says that he likes to check in on me.  We’ve been married for 20 years and he always comes home for lunch. I am one lucky lady to have such a knight in shining armor at my side. He never complains about doing so much. He cleans, cooks and does the laundry; after mowing the lawn and fixing whatever needs repaired in the house. Still, he never complains.

In the afternoon, I may visit my granddaughters and my daughter who live only a few blocks away. I’m still able to drive for “personal errands” and for about 10 minutes at a time. If I visit them, I get lots of hugs and kisses and more love and life than you can even imagine. They are rays of sunshine in a world of pain.  They don’t understand that I am in pain and that’s a good thing for now.  I like to light up their faces and give them love and receive that same love in return. My daughter and I may do a couple of errands or have a coffee and chat. It seems like a nice day, right? It’s true, it’s the nicest day you could imagine. Then I come home and I sink into my recliner and sometimes my cat will come and sit with me.  Her love is unconditional and she seems to know when I’m in more pain than usual. She gives me comfort and love, unconditional love.  By that time it is 3:30 in the afternoon.  It’s been a full day and my pain has risen from the activities.  I can’t do anything else.  I don’t have the energy to make dinner anymore. The fatigue is deep and lasts for long periods of time.  I rest and sometimes I nod off in my chair. The cat jumps off of the chair and the back door opens.  My hero is home! The love of my life and my forever soul-mate comes home from another day at his job as a teacher. We muster up something to eat for dinner. Mostly, for him; because eating has become something difficult now. It’s not fun or anything I look forward to anymore. I have IBS, S.I.B.O., and Gastroparesis. There’s so much I’m incapable of eating now.  If I just throw caution to the wind, and eat to be social or “fun”; I suffer more.  There’s the nausea, constant nausea and burning whether it is high or low in my stomach; it’s awful either way.  Then if I eat just a tiny bit too much, I will be sick for hours afterwards. This is something that others don’t see or understand.  My husband sees and watches it from the other side. Then there are the others who I “talk to” on the other side of this computer. Many of them truly do understand.

Then, my friends; it is evening time. The sun goes down and we watch some Television together and maybe read or “play” on the internet for awhile.  All too soon, it is 10:30 pm and my husband goes up to bed. He. has to work in the morning.  He kisses me goodnight and tells me not to stay up too long.  I tell him that I will come to bed as soon as I feel like I’m able to sleep.  Time goes by and it’s one in the morning, then 2:00 AM and 3:00 AM.   I start to nod off as I’m messaging the other “night owls” who are my fellow pain warriors. They are with me at night, because they too cannot sleep either.  We try to give each other support and the strength to persevere.  Finally, the sparks of chatter start to diminish online.  I too, feel like I truly want sleep to come and save me from my body and the pain that is within. Much of the pain is physical, but there is no lack of mental anguish.

***I come from a family that doesn’t know or care that I exist. They are called “M.N.’s” or Malignant Narcissist’s.  I try to stay away, keep my distance. For some reason, I cannot “let go” totally.  Maybe I feel that I owe them something for bringing me into this world. But truly it’s been nothing but pain and abuse as far back as I can remember. Then the failed marriages because I didn’t know how to feel love until I met my soul-mate, Craig. We’ve been married 20+ years now. I thank God for him every day because nobody has ever truly loved me until I met him. Some people ask me why I always go back for more abuse and more pain? I guess he’s still my father and one of my two brothers is still my brother. The other one, I cannot even discuss and won’t.  My oldest brother used to try and protect me, but one day he stopped.  It was the day that I told our family “secrets”. That is when my father took his revenge and turned everyone he could, against me.  I’m not sure why they listen to him? I’ve always been kind hearted, loving and as good a person as I can be. But now the entire family, including dozens of cousins, have shoved me “under the rug”. I am an an outcast.  None of them will talk to me or even look at me if we meet.

I don’t get invited to the very very large family reunions.  Even though I was the only one in my nuclear family that ever attended those functions.  I always took my children to them while they were growing up. I wanted them to have a sense of “family” and belonging. I helped my one cousin, the only one who is the same age as me. She is 6 months older and I always got her “hand-me-downs”. I went for food when she had her big garage sales. I helped her when the family turned against her as her mother was dying. I told her not to let them “punish” her and told her to hold her head up high. They were so mean to her because she couldn’t let her mother come and stay with her when she was very sick and dying. I felt her pain as she told me the stories of her abusive childhood;  we could relate to one another.

But **one day, in 2002, I was in a terrible car accident which started all of the physical pain. No one came for me except my husband. Again, my knight in shining armor there with me and at my side through thick and thin, good and bad.  ***My cousin said she couldn’t come to our house and sit with me for awhile so my husband could do errands. I couldn’t be left alone as I could not even go to the bathroom or dress/undress myself or.    cut my own food. She said that “seeing me in so much pain, made her depressed.  If she was depressed, then her family would suffer.”  Therefore, she could not see me anymore. I’ve not seen her again except at a couple of funerals, but she won’t even look at me. ****I went to my favorite Aunt’s funeral yesterday.  It was in a church and my dad didn’t come because he would have had to have been “nice to me”; and then they might know that we’ve tried to “talk a little bit now and then” again.  Only one cousin spoke to me and only one other even looked my way and smiled.  My Aunts children were welcoming. They knew that their mom and I had a relationship. My cousin, her daughter, told me “mom wouldn’t have had it any other way”; when I thanked her for “letting me come to the funeral”.

**I watched my family all sitting in the same church, singing “Let there Be Peace on Earth”. While the words came out of their mouths, there was no peace in that room.  Only a gathering of many who really don’t know each other anymore, but had one thing in common.  That one thing was the love for a woman who knew how to live and how to love. So you see, there is physical pain and there are other kinds of pain. Some of these exacerbate the others. We just have to surround ourselves with those who want us in their lives.  Those who want to give and receive; or share love with us.

When my head finally hits the pillow at night, I lie down and listen to my husband’s breathing. So glad to hear those sounds of life and know that this person beside me has truly shown me what real love is all about.  I never knew if I would have that, some people never get to know it.  People who are “damaged” like me, have a hard time very often knowing the difference between real love and hurtful kinds of “twisted” love.  I’m fortunate to know this man and lucky to have his love and to have him to love. I try to let the sleep come to me. Relax, sigh and listen to the breath sounds and the sound of the cat purring next to me. This is my real “medicine” in life.  They, along with my children and grandchildren are what makes me happy. I try to remember these thoughts as I fitfully sleep for a few hours, only to wake up to the “fear” of getting up on my feet once more again tomorrow.





Poems and Broken Promises


I continue to pretend that my family is dead, I cannot forget the horrible things that they’ve said.
The things that they’ve done are even worse to be told, I’ll never forget them, even when I’m very old.
They continue to be horrible, evil & mean. The reality that I once thought I had, it’s different and all is not what it once seemed.
I’ve thought of them as dead these past years, but they aren’t dead, I’m the one that is dead, I fear!
I am dead, I feel numb, I feel quiet and dumb. I feel like a piece of my life is gone, but I fear it is me that is wrong.
I’m missing my life, my love ,my kids & the sun! I’m missing it all because I feel numb.
I’m tired of hurting and wanting and needing. I just feel That darkness and sadness are leading.
I’m dead, I’m crying, I’m hurting, can’t you see? Can’t you see what’s happening inside of me?
I can’t leave this world, I have too much to live for…..two beautiful girls & a wonderful man that I adore. I have it all, right now, this moment, today. But in the blink of an eye it could all go away!
I have all that I want but I’m dead can’t you see? What I want and don’t have, is that nice family tree.
I want them to love me for who I can be, I thought they were dead, but the “dead” one is me.
Help me! Help me!,, I’m sinking like a ship! I need a life jacket, now, one that won’t slip. I want to save myself, but I don’t know how to swim, my head is going under & I feel like I can’t
I hate them! I love them! How can they do this to me? How could they do all that they did to hurt me? The hurt and the sadness are weights pulling me under, there are mazes, darkness, lightning and thunder.
I’m dying, I’m drowning in my world full of fear…..HELP ME! SAVE ME ! I wish a lifeboat was near!
A lifeboat is near, it’s inside of my soul. Others can’t save me, it is alone that I must crawl out of this hole. Alone & by myself, that’s one of my biggest fears. No one can be magic or save me and my lifetime of full of tears.
I want someone to fix it, fix me, fix it all. I thought that’s why Daddy’s were so big and so tall!
I don’t have a Daddy, a Momma or brothers, now I must try to trust some of the others.
Trust is a hard one for me to believe, whenever I’ve trusted, they make fun & leave!

I wrote this poem in about 1998! It was about a year or so after I tried to confront my parents about the abuse I suffered as a child growing up in their home. The abuse which continues even today and has never gone away! But now my mother has passed away (12-21-02). One saving Grace is that she told me that she “loved me infinity” before she died. She never said those words; and to me, she was saying that she was “sorry” in a way that she could say it! I forgave her, sang to her and spoke softly in her ear. But from that day forward, my father and brothers were more abusive than ever before. They still are doing things on purpose, just to be hurtful and horrible….any and every chance they get!
In that poem, I spoke of being afraid that everyone who does or did love me, would be gone” …I say “it could all be gone in the blink of an eye!”
Well….after all that I had already been through, I had no idea what was to come …..because in 2004, July….I did “lose” my eldest daughter. She chose a life with my abusers, all of them! She chose a boy in school who was known as A “bully”. He did illegal & immoral things. His mother called and lied to me, for her son and my daughter! My ex got involved and then my father & brothers joined in and they all have watched and gotten pleasure from my pain! They helped her turn away from me, from us…
My ex, their father, was found “Guilty” of a crime against a young woman and I was subpoenaed to testify against him after he was abusive to me, to our dog, to us! He was ordered by a judge & CFS, to have “supervised visitation” only! He chose to move 1,000 miles away! I had no choices, but he sought revenge and he sat quietly waiting for the teenage years of rebellion! He was never a “father” to the girls during their childhood. . took advantage of that and anytime I’d try to teach “good values” and morality, he’d find a way to go against me and hurt me. Truly that hurt our daughter also, but she won’t see that or try to understand that ….until, or unless one day her own daughter insists at age 17, when she’s not even graduated from High school, yet she wants not only “permission”to sleep over night at her boyfriends house (in the same bed & room but she wants to smoke cigarettes & pot, drink alcoholic beverages, meet older boys at the park , in their cars, & make exchanges for one thing or another! We, as young parents may say to ourselves “oh ….THAT will never happen to me, or to us…..but it did and it does! No amount of love, being there and being available, keeping a good schedule and good rules, never missing any event that is important to them. Nothing can stop it from happening to any of us. I hope one day she’ll understand that I loved her enough to let her hate me!
Well….by then I had already been in a car accident,(2002-a man ran through a red light) had several surgeries, including a pacemaker and three years of brain injury rehab! I had 8 years of Physical therapy & then I had a heart attack after my 1st “Mother’s Day” without my eldest daughter! A year later, I had a CVA aka: a stroke! I acquired a horribly painful & progressive autoimmune, nerve disease called “RSD/CRPS” or Complex Regional Pain Syndrome II! Now it’s been almost 81/2 years since she left….the attempts that I made were mostly in the first 3 or 4 years! I had sent mother/daughter “Mizpah”necklaces. I sent cards each week with just loving messages, no preaching. In 2007, I texted her & sad “Im thinking of you and I love and miss you!” She did text me back & asked me to come to meet her at her job at a hair salon. I went and it was Nov. and very cold outside; which makes pain worse! She came out & talked at my car without ever inviting me inside nor introducing me to anyone! We met for lunch twice and it went OK, but All she talked about was her father & his new kids and family! I asked if she could talk more about herself and her life instead of my ex who was abusive & horrible to me & us! She didn’t call and I never heard from her until one day I got a text which read “Suzanne…why do you think people care about you? THEY DONT!!” I cried and my heart was broken again! Ive heard nothing now since 2007! My heart will remain broken because a piece of “me” is missing now! The door will always be open for her, at our home!!!

***these are some of the nice words she wrote to me only one year before she lost all love & respect for me after being hurt in a MVA…she wrote the one note in the front page of a scrapbook she made for me for a holiday gift. I had made one for her and her sister and she knew I wanted one too! The other is a poem she wrote for me on “Mothers day” 2003. But then I later found out it was for a grade…a homework assignment in school! But I still felt that it was wonderful! I’ll always love both of my daughters!! I feel a huge hole in my heart