Misery... Loves Company

I met Jamie when I was 14 years old. She has known me for OVER HALF of my life. She helped me get my first fake ID when I was seventeen. She and I got matching tattoos after we graduated high school. She visited so often while I was at Mizzou that she was an honorary roommate in my college house. She was with me the night I got Saved and helped me dedicate my life to God. I moved in with her once I graduated from Mizzou and decided to start working towards my Teaching Certificate. She led me to the first church in which I became a member. We shared clothes, make-up, secrets, even ex-boyfriends. Jamie is the type of friend who you forget that she knows you as well as she does; she is the type of friend who knows parts of you better than you know yourself…

Jamie and I had an hour and a half phone-date last week. We only live about thirty minutes away from each other, but with her two babies and my disability (and the million other demands in our lives) we talk to one another on the phone more than we see each other. However, Jamie is the type of friend with whom you can go months without speaking and pick right up as if you spoke yesterday.

Those are the best kinds of friends…

Jamie likes to “get real” with me. While we chatted last week, I told Jamie that I had decided to write a book about people who suffer from various conditions, such as chronic pain, chronic conditions and other “invisible disabilities,” as I discussed in my last blog. Jamie is one of my greatest cheerleaders. She said, “Stephanie, you were meant to be a writer! You have been writing since before high school!” she reminded me and I laughed at her memory.

I told Jamie that even though I was excited that I was finally living one of my dreams – to be an author – I was sad. The only reason I am able to write a book NOW is because I am not able to work and I am on Disability. Ever since I decided to become a teacher, when I was twenty-one years old, I told myself that during my summers OFF, I would write my books. I taught for five years and never once wrote those books…

Jamie, being bold as she always is said, “Steph, this reminds me of the Stephen King novel, Misery. The main character literally tied the author to his bed and broke both of his feet so that he would write his book.” I waited for Jamie to explain to me her point… “Steph!” she called my attention, “Maybe God is doing this for you!” she said with excitement. “What if God has taken everything else, ALL of your distractions, even your health, away from you so that He could use you to finally write that book?”

Jamie left me speechless. Was she right? For years, I have asked God, “WHY?” Why did I hurt all of the time? Why did God lead me to be a teacher only to give me a body that can’t teach? Why, God? Why?

As ridiculous as I thought that Jamie’s analogy was at first, I started to re-think it…
I may not be happy that I am disabled and that I cannot teach, but the idea of being a writer very much thrills me!

I have been going through my physical pain trying to keep a smile on my face and showing others the silver lining in my life, but there are days when I am miserable inside.

Is my current misery God’s way of making my dreams come true?

Maybe one day, I’ll find out…

Name YOUR Invisible Disease!

As I have written this blog, and lived my life sharing my disability with others, for the past two years, I cannot tell you the number of times that YOU, those who read this blog, contact me…

You encourage me along my own journey…

You ask me questions specifically about my condition…

You ask me how you can help me and how to help others who you know who also suffer from what we call INVISIBLE DISEASES…

You tell me your stories... YOUR STORIES ENCOURAGE ME!

What I have learned, is that there are more of you who have an Invisible Disease than there are those of you who do not.

Recently, I began research on YOU and on YOUR STORIES. I started by sending a few friends who I knew had a story to tell an email and I asked them some basic questions. As I began receiving an influx of responses, I realized that I have an entire GROUP of people for whom these questions could be asked. Please read & respond to the following questions:

1. What is the name of your condition?

2. What age were you first diagnosed?

3. How does your diagnosis affect your daily life?

4. Can you describe the pain or most difficult part of living with this condition? (What hurts the most? What does that hurt feel like? etc.)

5. If this project becomes published, can I use your first name? If not, can I use your information with a fictional name?

To be fair, I will answer these questions, too. If you would like more details, feel free to scroll down the right side of my blog and learn more about my journey with chronic pain.

1. What is the name of your condition?
I was first diagnosed with Scoliosis. Years later, I was diagnosed with Chronic Pain Syndrome – due to Scoliosis. After an MRI, I received the diagnosis of Degenerative Disc Disease. The following year, I had a spinal fusion surgery (which made my condition worse) so I received the diagnosis of Failed Back Syndrome – Post Spinal Fusion Surgery. After almost two years of intense pain, I was re-diagnosed with Chronic Pain Syndrome. I am currently in the process of receiving a legal Disability Diagnosis because I am “unable to complete activities of daily living.”

2. What age were you first diagnosed?
Scoliosis = 13 years old
Chronic Pain Syndrome (1st Time) = 19 years old
Degenerative Disc Disease = 28 years old
Failed Back Surgery – Post Spinal Fusion Surgery = 29 years old
Chronic Pain Syndrome (2nd Time) = 30 years old
Disabled = 31 years old

3. How does your diagnosis affect your daily life?
My condition is considered severe. As stated above, the “unable to complete activities of general living” part is entirely true. The most difficult part of my diagnosis that I deal with daily is that I am unable to work. But, the little things that are affected daily are: I need accommodations to do EVERYTHING (sit, stand, walk, exercise, shop, sleep, bathe, do chores – you name it!). I am currently in the state where my disability affects every part of my day…

4. Can you describe the pain or most difficult part of living with this condition? (What hurts the most? What does that hurt feel like? etc.)
It is very difficult to pretend that I have a “normal” life with my condition. I have very specific requirements that I must follow; and if I do not, then I am guaranteed to have pain. My left QL (back) hurts the most; however, because one thing leads to another, I have daily pain in my entire low back; I constantly have a sprained Left Hip, my SI joints are regularly inflamed and hurt and I have slight, daily pain in my neck and right shoulder.

The best way that I describe my pain is this: Have you ever slammed your finger in a door? Do you remember that intense feeling that goes STRAIGHT to your finger? You see red. You also almost “see” the blood rushing to your finger. Then you feel the “Thump…. Thump…. Thump…” in your finger. It’s as if your heart moved from your chest and now lives in that poor, hurt finger. The word “throbbing” does not describe this feeling of pain! THAT is what my back feels like every day…

5. If this project becomes published, can I use your first name? If not, can I use your information with a fictional name?
My name is Stephanie and I have an (actually, many) Invisible Disease(s).

I'm trying to get an idea of what other conditions people I know deal with and how those conditions affect their lives. Please help me by participating in this questionnaire or passing it onto someone you know! You may hit “reply” on your email, email me at: steph2teach@gmail.com or leave your answers in a Comment on this blog. Don’t be afraid to share with me – or others – what your life is like living with an Invisible Disease.

Thanks so much for taking the time to share YOUR story!

Back-Breaking Miracles

Last Wednesday, I had my PT re-evaluation. The purpose of these re-evaluations is for my physical therapists (and I) to see how much progress I have made since the last evaluation. My last evaluation, held in November 2011, was AMAZING! I showed SO much growth and improvements in my physical recovery that my future looked very promising. This evaluation, however, was not so great…

Since I began participating in PT Bootcamp from September to present day (about 5 months), I have made incredible improvements. My pain levels have overall decreased, I am completely off of any narcotic or “harsh” medications, I require less sleep each night, my appetite is recovered and I have gained some of the weight that I had lost from the surgery and overall, I am able to attempt many activities of daily living that I could not do before starting PT Bootcamp. However, at this particular reevaluation, my body was not responding to the directions given by The Facility President, Dr. Julie, and before I knew it, I was crumbled on the floor, screaming in agony. Unfortunately, I ended up leaving The Facility in excruciating pain. I threw out my back… again. Dr. Julie was not sure which exercise was the culprit for my relapse; regardless, I spent the next four days bed-ridden and praying for God to take the pain away.

Even though those four days were spent in misery and distress, with the extensive amount of rest my body received, by Saturday, I was able to walk on my own and decrease my medication back to my regular dosage. By Monday, I re-visited The Facility and saw my regular PT, Nancy. I was able to exercise on the stationary bike and then spent the next 45 minutes filling Nancy in on the pain and working on my sore muscles. Nancy felt responsible for what happened at the re-evaluation. She wished that she would have been at The Facility that day to help monitor my activities and then work on my muscles once my back gave out. It wasn’t Nancy’s fault. It wasn’t Dr. Julie’s fault. It wasn’t my fault. As the saying goes, “it is what it is….”

Even through the pain, Dr. Julie was able to notice some improvements from the last evaluation; however, they were not as significant as she expected. Out of all of the exercises, I only scored Proficient in: kneeling and crawling. I could not: bend forward, walk, stand, reach, maintain balance, squat or sustain appropriate hand-eye-coordination. Dr. Julie determined that, at this point, not only am I unable to return to the Special Education Classroom, she also needs to determine a specific condition for which I will qualify as “disabled.” Even though I receive Disability Provision from my employer, Dr. Julie concluded that I require an official disability diagnosis because I am “unable to perform necessary activities of general living.” Additionally, I legally require the diagnosis so that I can qualify for healthcare and other benefits if I do, in fact, have to officially quite my job with Special School District due to my inability to work in the classroom.

I felt as if someone was stabbing me in the heart in addition to the torture aimed at my back. Was I always going to be “this way?”

That question is still unanswered. When I explained the results of the re-evaluation to Nancy on Monday, her eyes filled with tears. “Oh, Steph," she cried, "You’re so young! This just isn’t fair!”

Nancy is right. THIS IS NOT FAIR! But, this is life. Today, I went to Acupuncture with Maureen. I had to cancel my Acupuncture appointment last Friday due to my condition. When Maureen saw me this afternoon, she was very cautious; however, I convinced her that I felt much better than I had last week. Maureen said, “That is a miracle, Stephanie!” She explained, “For your body to go through such extreme anguish on Wednesday, then bounce back almost completely just a week later, is rather remarkable…”

It was a miracle! As much as I cursed God and begged for recovery earlier last week, I had not noticed that God was listening. I was so consumed by the throbbing torture in my back and the soreness that circulated through my body that when I finally started walking four days after the re-evaluation, I did not think of it as a miracle. When I rode the bike at The Facility on Monday, I did not consider that activity as part of God’s Plan. When I exercised for 30 minutes on Tuesday, I did not acknowledge the strength suddenly given to my formerly-incapacitated limbs as exceptional. When I was able to go to the gym this morning, I did not recognize the recovered body that God had provided to me this week. No, He did not heal my body from its disability… But, He did take away the pain from last week and perform His own miracle by restoring my back to its pre-re-evaluation-self. In the grand scheme of things, I’d rather have this body than the one which could not get out of bed any day!

I have heard that God performs miracles every day; I just never before realized that people often over-look them because they are too busy looking for something else instead.

What miracle happened to you this week?

Don't Worry, Be Happy!

"Don't wish me happiness - I don't expect to be happy, it's gotten beyond that somehow. Wish me courage and strength and a sense of humor - I will need them all." - Anne Morrow Lindbergh

Someone asked the other day, “Are you happy?”

Are Gage and I happy that we have a disability? No. Are we happy that I endure pain daily? No. Are we happy that our lifestyle has drastically changed due to the drop in our household income? No. Are we happy that we are not allowed the simplicity of life without chronic pain? No.

But… Are we happy people? YES! We have much to be thankful for and we give thanks daily for the love in our life, the friendships that brighten our hearts, the provision from Our Father, and the little things that make us laugh ALL throughout the day – even during days that are filled with pain or discomfort.

For years, Gage has said to me “Happy Day!” For years, I assumed that this phrase was Gage’s way of saying, “Have a good day!” I was wrong. Months ago, on a lazy Saturday morning, Gage said the familiar words to me, “Happy Day!” I smiled and scooted closer to him, resting my head upon his shoulder. The night before had been a battle for us: The Dodsons vs. The Disability. Thankfully, my pain usually reaches its peak just before bedtime and, thankfully, the morning usually brings to me a new, reduced-pain day.

“Happy Day!” Gage said again, sincerely and with a smile. “Happy Day,” I repeated. Gage looked at me with a suddenly serious expression. “Do you know why I say ‘Happy Day?” he asked. “No,” I told him, speaking honestly. “I say ‘Happy Day’ because every day that I wake up next to you is a day that makes me happy.” I never knew the meaning behind his made-up phrase, and his words melted my heart.

When Gage and I had been dating for six months, he asked me, “When do you think it is too soon to get engaged?” We knew that we were meant to spend the rest of our lives together, but we did not want to rush into anything. On the night of our six-month Anniversary (yes, we celebrated each and every month that we were together), after taking me to dinner, Gage took me to a jewelry store and we picked out a promise ring. Gage is a traditional man. My father gave my mother a promise ring when they were dating, and Gage wanted to honor the tradition of my family. He also wanted to ask my father for my hand in marriage before we got engaged. However, we were so in love that he could not wait to put a ring on my finger, so that night we picked out the first piece of jewelry that would symbolize our lifelong commitment to each other.

When Gage and I discussed my soon-to-be married name and initials, S.A.D. (Stephanie Anne Dodson), I grew scared, wondering if we discovered a sign that pointed to how our life would become. However, I quickly realized that the only sign that I saw was that I would be a fool to walk away from the love of my life because my initials spelled something… sad. Without a doubt, I knew that Gage was my future husband. Without a doubt, I knew that Gage was the man who would stand by my side, through good times and bad; the man who would raise my future children and who would help make my life better. Without a doubt, I knew that I would do anything for Gage and that being with him was a gift from God.

When the promise ring came in, Gage surprised me by having it engraved. On the inside of the ring, he wrote, “Be SAD.” We found humor in the irony of my initials, for we both knew that there would be nothing SAD about our life together.

When someone dear to us asked, “Are you happy?” Gage responded, “Yes! I am very happy!” He meant it. He still means it, and so do I.

I realize that my last few blogs have encouraged friends and loved ones to reach out to Gage and me for both physical and emotional support. Today, I want to explain to you that even though we have a difficult life, our house is filled with laughter, we praise God every day for countless blessings in our life, we celebrate the improvements that my body has made since PT Bootcamp began this summer, we hold on tightly and with joy to the love that we share and to the love that satisfies our emotional and spiritual needs. We ARE happy.

It is important to recognize that a person can face challenges – even a lifetime of challenges – and still find reasons to smile. Life is filled with choices. Gage and I may face more tests and trials than the average thirty-something-year-old couple, but we choose to look for the good in our life and to NOT focus on the bad. When times are hard, we reach out to one another – and to our family and friends – for encouragement. We want to be that encouragement to our family and friends, too! We want to share our happiness!

I may be S.A.D., but I would not ask for it to be any other way.

Matthew 5 – The Sermon on the Mount (ESV)
1 Seeing the crowds, he went up on the mountain, and when he sat down, his disciples came to him.

The Beatitudes

2 And he opened his mouth and taught them, saying:
3 “Blessed are the poor in spirit, for theirs is the kingdom of heaven.
4 “Blessed are those who mourn, for they shall be comforted.
5 “Blessed are the meek, for they shall inherit the earth.
6 “Blessed are those who hunger and thirst for righteousness, for they shall be satisfied.
7 “Blessed are the merciful, for they shall receive mercy.
8 “Blessed are the pure in heart, for they shall see God.
9 “Blessed are the peacemakers, for they shall be called sons[a] of God.
10 “Blessed are those who are persecuted for righteousness' sake, for theirs is the kingdom of heaven.
11 “Blessed are you when others revile you and persecute you and utter all kinds of evil against you falsely on my account. 12 Rejoice and be glad, for your reward is great in heaven, for so they persecuted the prophets who were before you.

I am the Voice of Chronic Pain - Part Three: How to Help

Just as there are different levels of severity to a disability or condition, there is also a hierarchy of help that can be available to each individual with a chronic condition.

Last year was one of the worst years of my life – of our life. My promise for recovery was broken, so was my spirit. Prior to my surgery, I was physically limited for about eleven months as my back was injured and never healed. I was allowed to be a Newlywed for only three weeks, then the early Joys of Marriage were stolen from me, too. Gage and I were not even living together for a month before my surgery changed both of our lives. We did not know what to expect of my rehabilitation, for everything that doctors foretold of my recovery was wrong (aka, never happened). I was not getting better; however, because I was told that I would be healed and return to work eight weeks after surgery, my employer, my family, my friends – everyone – expected me to recuperate and show improvements. Due to the fact my condition actually regressed, Gage and I were not prepared. We did not know how to ask for help. We did not know who would help us – or how. We did not know what we could ask for from others. We did not even realize what we needed at the greatest time of need in our marriage because we were so consumed with just getting by…

The summer that I injured my back (July 2009), I also was forced to quit my position as a Homebound Instructor for a boy, Bryan O’Hare* who had a chronic illness that prevented him from attending school. I had worked with this boy and his family for years before I developed my own disability and during my time there I constantly noted the intense support that this family received from their family, friends, church, neighborhood, community, hospital staff, strangers and more.

As I stepped into my own disabled life, I was aware of the types of help and support that were offered to the O’Hare family; but, I was unaware of their availability to Gage and me. I had seen the customary Acts of Courtesy & Kindness given to families in need, to grieving persons, to cancer patients, to others immediately after undergoing surgery – you name it! However, I had no idea what would help me – or others with chronic illness. To me, my pain was my life; my restrictions were my new reality; my marriage was structured around my condition and Gage and I thought that that was “normal.”

Countless people have approached me and asked, “What can I do for my friend who has a disability or who is in pain?” The following is a list of Acts of Kindness that I have seen bestowed upon the O’Hare and other families, including my own, that have made a world of difference:

- Laundry Fairy – The O’Hare Family would weekly set baskets of dirty laundry on their front porch and people from their church and community had a rotating system set up so that someone would come, pick up the laundry and return it clean and folded a few days later.

- Dinner Fairy – The O’Hares were also blessed with regular meal drop-offs. My brother-in-law also was blessed with Dinner Fairies when his wife passed away last year. His community set up a Dinner Schedule and we supplied our cooler; his Dinner Fairy would stop by and place the family dinner in the cooler so that when my brother came home from work, dinner was waiting for him and the kids.

- Car-Pooling: For anyone who is restricted in driving (or cannot drive at all), it is such a blessing to have someone else offer to drive them to an event! This is also a huge help for families with multiple children who have a loved one with a condition – it eases the burden of “who will pick up the children from school while I stay home with my sick child?” Additionally, it is helpful when friends offer to meet half-way or to come to our house instead of having us pack up all of my medical devices so that I can be somewhat comfortable in your home.

- House-Cleaning: Before I got married, my mother came to my home once each month and cleaned my house for me. Her help was paramount – my disability restricted me entirely from such simple Activities of Daily Living and her physical act of kindness allowed me to have a home where I felt comfortable and organized.

- Grocery Shopping: Since I am still unable to push a cart full of food, friends have offered to go grocery shopping for me OR to take me, pushing the cart, reaching items on the lower shelf and loading/un-loading the car.

- Running Errands: If you live close to your loved one and are headed to a store, call and ask if there is something that you can pick up for them while you are out – my next-door neighbor, Danielle, did that when she knew I was sick or in severe pain last year and whether I needed something or not, that phone call meant the world!

- Sponsorship: Many people with health problems also have financial problems. Healthcare – even with insurance – costs money! Gage and I have received donations (and offers) from loved ones to help pay for: Physical Therapy, orthopedic shoes, Nutritional Counseling, Acupuncture, Massage Therapy, Prescriptions, etc. Additionally, we have worked with our regular doctor offices and applied for Scholarships. I have received scholarships (that reduced the costs of my co-pays and deductibles) at my PT Facility and with my Pain Counselor; additionally, Gage and I have exchanged work (aka “bartered”) with my Acupuncturist for reduced costs on visits. Last year, we would not have been able to make it without the financial support and scholarships from both our family and those organizations!

- Emotional Support: To me, the most valuable offering I have received from my loved ones has been emotional support. I need those around me to ask, “How are you?” I need people to believe me when I say that I am in pain. It is such a blessing when friends offer me pillows or offer their comfortable chair to me when I walk into a house, acknowledging that I have physical needs and showing me their interest in my comfort and health. What helps us most is having flexible, understanding relationships with others. Unfortunately, we can never 100% commit to an invitation. Ultimately, my disability determines whether or not I (or we) leave the house. I sympathize with the disappointment felt when we have to cancel or decline, but guilt-trips are unnecessary and understanding of our circumstances is what will ultimately keep our relationships strong. My best friend, Melissa, even researched "How to help a person with a disability" and blessed me with many wonderful acts of kindness and encouragement. The fact that she took the time to do such research filled my heart more than words can say!

The above are what I consider Extreme Measures of Provision. One thing to note is that the Laundry Fairy and the Dinner Fairy are quick and often unseen. I know that when I am in extreme pain – enough to keep me from even making myself a bowl of cereal – the last thing that I can handle is small talk at my front door. Most days like that, I cannot even stand to open that door in the first place. If you chose to be someone’s Dinner Fairy, consider setting it up so that it is a simple exchange of the gift. Set aside another time with that family where you can sit down and visit – that is a different type of support all together! For example, after my surgery, my mom set up weekly dates where Gage would stop by her house on his way home from work and she would send him with a meal or two. Also, my dear friend and co-worker, Dina, went to a Catering Company and brought us several frozen meals that greatly helped us on evenings when I tried to work a day and came home unable to move and when Gage had the weight of the world on his shoulders. I admit, it is still very difficult for Gage and I to ask for help – but these particular acts of kindness really made a difference in our life last year!

For Friends and Family of Gage and I, I am trying to push my (and my husband’s) pride aside to express what would help us most during our current stage of Disability:

- PLANNING: If you wish to see us, please send us or extend an invitation with as much notice as possible. Many people assume that since I am not working that I have an open schedule. This is not true! I regularly attend 4 appointments each week, I also complete 2-3 additional independent PT sessions that same week and I typically have a Specialist appointment added to that schedule, averaging up to 8 physical appointments or treatments EACH week – not counting social events already on our calendar and the start of my Vocational Rehabilitation! I am also REQUIRED to rest. And, I am still physically unable to withstand back-to-back social functions. In order for Gage and I to say “yes” to an invite, we need at least a week’s notice so that we can coordinate my appointments with my rest and then find a way to add the fun Social Event to the calendar. As chaotic as it sounds, we are getting very good at coordinating all of these events, but without notice, we usually are forced to say “no” because our lifestyle does not allow for the type of flexibility in which people without a chronic condition are blessed.

- ACCOMMODATIONS: As I mentioned before, I am always touched when my condition is taken into account by others. I often bring my orthopedic cushion with me wherever I go, but the offer of comfort, pillows, a stable/supportive seat, etc. truly helps me feel both physically and emotionally at ease.

- HELP WITH HOSTING: Gage and I often find ourselves in a catch-22 situation. My house is the most comfortable place for me to be; it holds my specialized pillows, my heating pads, my medication, my body wraps, my back brace – all of my essentials. HOWEVER, being the Hostess with the Mostess is difficult when I am in pain and trying to maintain a comfortable position so that I can enjoy my company for as long as possible. Gage and I have found that Easy-Hosting works best for us; ordering food instead of cooking it ourselves, making part of a meal and having our guests offer to bring the other part of it, telling our company that “our home is your home” so that they are comfortable getting their own drinks, silverware, etc., playing Musical Chairs – I often cannot maintain one position for more than 45 minutes, moving from the dining room table to the couch, switching from one place on the sectional to another – you name it, I am a squirmer and if you come into our home, please be aware that I may be all over the place or I may be tucked into a corner and not move all night long!

- WE NEED ENCOURAGEMENT: In all honesty, my disability scares me. I have questioned my faith, I have gone through bouts of depression, I am working through the steps of the grieving process as I face the reality of my condition… AND SO IS GAGE. This was not the life I signed up for and it is not the marriage that Gage thought he was entering. My heart gets light every time someone emails or leaves a comment after they read my blog; happy tears fill my eyes every time I get an Encouragement Card or Care Package in the mail; my loneliness dissipates every time someone close to me calls me after a “big” doctor appointment to see how it went. If you are praying for me, please tell me this! If I come across your mind, please text me! I cannot even put into words how much the support of family and friends lift my spirits and remind me that I AM NOT ALONE… I AM LOVED…

- REMEMBER MY HUSBAND: I say this again and again – My husband and I are one. Gage is disabled as I am disabled. He hurts when I hurt. His heart breaks every time we go to the doctor and receive “bad” news just as deeply as my heart breaks. OUR WORLD is on his shoulders when I am put on bed rest and it becomes his job to take over EVERY aspect of running our household. Gage needs to be loved. He needs his friends and family to call him and ask him how HE is doing. He needs to know that people know what he (we) endure through our life of disability. He feels as if his burdens are lifted when his friends ask him how I am doing; ask GAGE how Gage is doing, too! He feels protected when friends tell him that they are praying for me. PLEASE pray for Gage, too! Above all, recognize that Gage believes in his role as my husband; he does not mean to put others “second” – he wishes to be respected for the sacrifices that he makes when he chooses to care for his wife, not handed a guilt-trip or expected to give explanations for why he has to say no or makes the decision to aid his disabled wife rather than go out with his friends. (Please note, I am speaking for Gage right now based on what I have seen him go through and heard him say over these past three years, if you would like to discuss this with him more, call him…)

Currently, Gage and I are not in the same, terrorized-stage of life we were prior to my current diagnosis of Failed Back Syndrome and to me qualifying for Disability. I can now help Gage with a majority of the household chores and I can attend many social functions with him! Yes, we still have our struggles, but this blog is not a passive attempt at getting someone to clean our house or bring us food (not many know how to cook oil-free, vegetarian meals anyways – LOL!). Gage and I are learning to take care of those things on our own through trial and error and a lot of forgiveness for each other and laughter on both of our parts. If you take anything away from this blog, I encourage you think of ways that you can help your loved one who has a chronic condition and then DO IT! I am never offended when someone asks me what I need – do not be afraid to ask your loved one what he/she needs from you. Also, just as I explained that last year, Gage and I did not know what we needed or how to ask for it, I recommend that if you see a need, act on it without waiting to be asked! Lastly, if you have additional ideas of ways that you have helped others in the past, share them in a Comment on this blog!

I pray that this blog helps you better understand the life and needs of a family with a chronic condition or disability. It may not be your duty to help anyone, but if it is put on your heart, I hope that these suggestions lead you to a place where you can be someone’s Fairy or Blessing.

I am The Voice of Chronic Pain - Part Two: Friendspectations

In my last blog, I explained that: What many people do not realize is that when one person in a family has a chronic condition, the family has a chronic condition. This plays true for close friends and well-known people in your community, too.

I have been very blessed with having a plethora of family members and friends encourage me all along my journey. However, this particular blog is difficult for me to write…

One of my closest friends once said to me, “...humans have a tendency to measure people up to their own standards OF THEMSELVES. And if that person ‘fails,’ we feel slighted in some way - that they didn't meet our expectations.” I am the first to admit that I have admittedly unrealistic high expectations for myself. That being said, I also have impractical and idealistic expectations for those around me, too. This has undoubtedly caused me to feel insult throughout many stages of my disability – these expectations that I place on those around me have ultimately caused me to hurt myself…

My wise friend continued, “It's not someone else’s job to meet my expectations of myself. It's my job to learn each as a person and appreciate the goodness in each of them. So even though you feel that someone is not as good of a friend to you as you are to them - you can't hold that against them. That is not the standard they hold themselves to (obliviously). You can show them how to be a good friend by example... but [if] every time they disappoint you, you hold that against them, THAT IS YOU not being a good friend to them.”

Hmmm….

I had to learn a lot about myself the hard way throughout my disability. When I first had surgery, I literally expected the world to stop; I assumed that because I was undergoing The Knife, every single family member and friend in my life would stop their lives to help me (and Gage) with our new challenges. I NOW understand that those expectations were completely naïve; however, that was my truth. That also led to many of my heartbreaks over the past few years.

I will write about how family and friends can better support, help and encourage their loved one who is in chronic pain, but this blog is specific towards expectations, or Friendspectations. Life would be wonderful if every family member and friend loved us the way that we wanted to be loved. But, that does not always happen. Conversely, it is important that we ask ourselves: How often do we actually meet the expectations of our loved ones?

When I first threw out my back, I expected my loved ones to be considerate, sympathetic and patient with me. I do not think that these are unrealistic expectations. However, as my condition worsened, my expectations for those around me amplified. I definitely created a hierarchy in my mind regarding who would help Gage and I and how. I realized that I divided those close to me into Tiers – and each Tier had a particular level of expectancy.

Family Members were on the Top Tier. I literally expected them to STOP EVERYTHING to care for me AND Gage. I believed that my parents and sister should call me daily as well as for Gage’s family to do the same (to support him and to see how I was recovering). I expected intense levels of help from all family members. I expected their world to reflect my disability. I expected generous amounts of care, sacrifice and assistance. I expected Gage and I to be the center of their universe.

Close Friends were the Middle Tier. These people in my life were given many of the same duties as Tier One; however, I relinquished them of daily support. I anticipated phone calls, cards, food and concessions – our social life ultimately revolved around my disability.

Other Friends, Close Co-Workers, Neighbors, Church-Friends, etc. were the Last Tier. I counted on these people for support in the environments where I saw them most – work, church and my community. They were supposed to take care of me when I was not at home and when Gage was away.

In a perfect world, ALL of those who love me would do everything that they could to care for not just me, but Gage, too. And, most everyone DID! But, my expectations were inappropriate and I realize that now. However, they stuck with me through the first several months of my surgical recovery and every time a family member forgot to call me or Gage, I cried. Every time someone offered to stop by the house and cancelled, I was devastated. Every time a social event could not accommodate my physical needs, I was offended. Every time the phone did not ring when Gage or I needed comfort or encouragement, I felt insulted. Here we were, a newly-married couple living the life that most people who have been married fifty years do not have to endure, and I expected everyone in our life to stop and help us.

I can only assume that while I was offended, my extreme expectations offended others, too. For that, I am whole-heartedly sorry. I should have been grateful for every single kind word or gesture Gage or I received. I should have been surprised and appreciative for ANY good deed aimed at me and my husband. Please do not misunderstand, I did appreciate EVERY act of kindness we received; where I faulted was that I expected them all…

Unlike what was promised to me, I did not recover after eight weeks. As you know, I was part of the 5% of patients where my spinal fusion surgery made my condition worse. Every day beyond the two months, I was angry. I demanded the recovery that was sworn to me. And, I believe that I often took out my anger and pain on those closest to me…

What I learned months later, and continue to learn every day of my disability, is that any act of compassion is a gift. It is not my family’s or friend’s fault that I am disabled or in chronic pain. It is also not their “job” to care for me and make my life better. When they bring me food, I am grateful. When my cousin gives up his seat so I can sit down, I am honored. When my parents schedule a holiday around my pain-restrictions, I am humbled. When my friend makes a 45 minute drive to my house so that I do not have to sit in a car for an amount of time that could trigger pain, I am thankful.

Yes, there are MANY things that family members and friends of a chronic pain or disabled person would appreciate. I will get to those in my next blog. Today, I wanted to remind myself, and anyone else living with chronic pain, that expectations can hurt just as much as a failed surgery.

Stepping back, I can see that my support system was amazing those first days and weeks post-surgery. I wish I could actually remember more of it. I was taking so much medication, many of the memories I have from those days were given to me from my husband. I have vases to prove I got flowers. I saved all of the cards that I have received for those days when I find myself still feeling alone; those cards remind me that I have many people who are praying for me. I have Tupperware toppling out of my cabinets from all of the food brought to us. But, I asked Gage not to take any pictures. Why would I want evidence of one of the worst experiences of my life? Why would I want visuals of the most painful event in my life? When I do have a flashback, I try to calm myself with the good and wonderful things that my family and friends did to help Gage and I through those dreadful days.

The greatest things that I recall my Support Network doing immediately after surgery were:

- Food and Flowers: Immediately after I had surgery, Gage wore his Nurse Hat more than any other. He did not have time to cook me a meal, let alone himself. My parents and Gage’s parents brought us food more times than I could count! And, my family and friends filled my hospital room with flowers – my favorite Cheer-Me-Up gift!

- Pillow Talk: I still cannot get enough pillows! Immediately post-surgery and now – COMFORT IS KEY! I had people help me get comfortable around the clock. I even had a cousin make me a special pillow cover which I still use regularly to this day! And, my loved ones understood that when the pain was SO unbearable, I needed alone-time. If you have never had major surgery before, it is not only painful, but it is EXHAUSTING! One minute, I was up and chatting with a room full of amazing visitors, the next, I was screaming and begging for the room to empty so I could die to my pain by myself.

- My mother-in-law brought me pajamas to the hospital. That was one of my favorite gestures. It was practical. It was sweet. It was soft. It was the perfect gift for the moment!

- Also, my mom and dad took care of my dog so that Gage could stay with me at the hospital around the clock. I know that to those of you who are not dog-lovers, this may not mean anything to you, but our dog is our baby. Taking that burden off of Gage’s plate – on top of him taking care of me – was a wonderful gift!

- I was in the hospital for about 6 days. I needed medical care. Gage needed physical and emotional support while he supported me at the same time. My parents and sister were with us around the clock and other family members and friends rotated in and out of the hospital door more than I could count. Those were an excruciating six days and I will never forget the importance that our support system played during those days.

Prior to writing this blog, I admitted to my friend, Steven, who asked HOW our friends can help me (and Gage) that this particular blog would be difficult for me to write. I am ashamed at my selfishness. I am also saddened by the memories of the struggles that Gage and I endured that first year post-surgery. However, I pray that this blog serves its cleansing purpose. Yes, Gage and I are still in need of support. Yes, I am still in constant pain and I can offer many suggestions to friends and family members who WANT to support their loved one in chronic pain. Today, though, I thought it important to remind myself – and anyone who wants to reflect on their own journey in life – that expectations can either shape or break a relationship. I am thankful that my eyes were finally opened to the fact that I AM GRATEFUL for any love and kindness bestowed upon myself and my husband.

Stay tuned to learn HOW Friends and Family can help a loved one who is in chronic pain in Part Three of this multi-part series!

I am The Voice of Chronic Pain - Part One: Spouses

I said to Gage when I started my blog, “If this blog helps even one person understand chronic pain, then I will feel complete.”

I have not helped one person. The wonderfully amazing fact is that since I started this blog, I have been contacted by COUNTLESS people, some telling me their personal testimonies and battles with pain, some asking for help, some wanting more information as to how to help a loved one with pain, some seeking medical advice and so much more. Through this blog, I am honored to say that I have helped many!

I started this blog because my Pain Counselor said that it would be therapeutic. When the President of my PT Facility “happened” to read it, she encouraged me to keep writing. She told me that “People with chronic pain need a voice. You should be that voice.”

Here I am, a disabled, thirty-one year-old newlywed (kind-of) who has a story. But, I have learned that I am not the only one with a tale to tell. Recently, a close friend came to me asking for help. She, too, was diagnosed with a chronic pain condition. She, too, is young. She, too, is married and a hard-worker and highly involved in a multitude of extra-curricular activities. At the beginning of this New Year, she emailed me AND her husband, begging for help. She did not want to live another year with the type of pain she had the year before, but she did not know where to begin. She did not know how to get help. She did not understand her choices. She did not realize how having a chronic condition would affect not only her life, but the lives of those around her. And, most importantly, she did not know how to involve her husband.

What many people do not realize is that when one person in a family has a chronic condition, the family has a chronic condition. I have written before that our Pastor said to Gage and me, “Gage, if Stephanie is disabled, then you are disabled. You are one.”

I have learned that it is not just my husband’s job to know about my pain – his role in my life is much greater than that! He is my Partner. He is my Team-Mate. He is my Other-Half. If half of me is broken, then all of US is broken.

Since July of 2009 (when I attained my back injury that never disappeared), Gage and I have been forced to recognize that he may be my husband, but he will also wear many hats. He will be my husband, my protector, my provider, my best friend, my nurse, my advocate, my errand-runner, my chef, my maid, my dog-walker, the person I turn to first with upsetting news, the person I turn to first when I make improvements, the person who encourages me when I do not want to do my PT, the person who dries my tears when I am sobbing in bed because I do not to wake up to another day of pain, the person who speaks on my behalf when I do not have a voice. When a wife (a spouse) has a chronic pain condition, the man is no longer just a husband (which is a large role to play in anyone’s life).

I have been asked time and again: What does Being One look like to a spouse?

Granted, I recognize that every marriage is different and may be built on belief systems different than those of Gage and me, but this is what it looks like in our marriage and what I would recommend for any married couple dealing with a spouse who has a chronic condition:

- When you are in chronic pain, you need support - physical and emotional. You can't get that by yourself. You need to involve your family and friends. You need to learn to advocate for yourself and, when you cannot, your spouse needs to learn to advocate for you.

- What is an advocate? In this case an advocate is someone who has your best interests in mind and is ready to fight for them – whether you are capable or not. I use the word Advocate a lot when I plan my medical appointments. A very wise woman (also a chronic pain patient) said to me, “Stephanie, NEVER go to an appointment alone. You will be emotional. You might not be able to hear what the doctors are telling you. Your emotions may take over and you may forget the questions that you prepared or the concerns that you have. Take someone with you who will advocate for you – someone who will not only wipe your tears when you hear bad news, but someone who will do that with one hand and write down notes with the other.” Since that wonderful woman shared her wisdom with me, I have not attended a single Specialist or Doctor appointment alone.

- Your advocate can help you outside of the doctor’s office, too. Gage knows my tell-take signs of pain. He keeps track of time when I don't. If I've been out-and-about for more than three hours, he checks in with me to see if I need to leave or if I can stay longer. Last Tuesday, he even lectured me for both cleaning the house and working on the budget for hours in the same day. Before Christmas Gage attended my PT appointments with me so that he could learn from Lori, my exercise PT, how to "spot" me at the gym; then he learned some myofascial release techniques from Nancy, my pain-management PT, so he could treat my muscle pain at home. We even used some of our Christmas money to buy a folding massage table so that Gage can help me with my trigger-knots at home without hurting HIS body. Your advocate is your PARTNER. When I feel better, Gage feels better. When I hurt, Gage hurts. Whatever your advocate can do to protect you, he/she must do it! Being an advocate is the greatest honor one can achieve – it is the honor of being the hero to the person you love most in life.


- One of the greatest things that Gage does is he has learned to not take my emotions personally. When my pain levels increase, so does my bad mood. This is a known given. Recently, after an incredibly painful day, where I admit, I was a bit of a witch, I apologized to Gage for being so awful. He smiled, wiped my tear and said, “No apology needed. I know it wasn’t you being cranky, it was your pain.” This is patience. This is mercy. This is God’s grace here on earth! As a spouse, you have the ultimate gift of grace that you can give to your beloved. Don’t keep that gift all to yourself!

- A husband should always validate his wife’s pain and avoid denying it. Saying “You’ll feel better soon” makes me want to scream! Saying, “It must be awful to hurt this much,” makes me want to melt in his arms. A colleague once said to me, “You never know how difficult it is to live with chronic pain until you have to live with it.” Boy was she right! Unless you live with pain, you cannot understand. You also, therefore, do not have the right to judge or criticize it. If you have ever had a migraine, broken a bone or threw out your back, try to remember that pain, multiply it by 100 then take away its expiration date. That is kind of what chronic pain feels like… Husbands, it is not your pain. Yes, you are put in the position of caring for the pain, but you do not have the right to define, quantify or measure it. You must trust your wife that when she tells you she is in pain, SHE IS. She does not want this burden – why would she lie about it? Trust her and support her. Chronic Pain is one of the most misunderstood diagnoses to bear – the greatest act of love is to help your spouse and share that burden in any way possible.


There are countless other things that a spouse can do to help the person with chronic pain. Some simple ideas are:
- Offer to help run errands or do the things around the house that are known pain-triggers to the one suffering.
- Ask – and ask often – How are you?
- Hug her (him) when she cries and feels controlled by the pain; don’t just say things to make her feel better, show her…
- Understand limitations – When I have to say “no” to an invitation because I am in pain, I already am upset. I already feel trapped. I already feel (unnecessarily) guilty for my restrictions. Giving me a guilt-trip on top of my own will not help either one of us, or change the fact that I am physically unable to go somewhere.
- Most important, celebrate my successes! If I went an extra hour without needing medication, CELEBRATE that with me! If I enjoyed dinner and a movie instead of just a quick drive through meal, CELEBRATE that with me! If I share with you that I was able to clean the entire house by myself without causing myself more pain, CELEBRATE that with me! If we are able to have a fun date night that is not cut short by the chronic pain curfew, CELEBRATE that with me! Find reasons to celebrate with each other – seeing the good as often as possible will soon start to outweigh those moments of excruciating pain – even if those moments never stop.

To the person with chronic pain reading this, I have learned that my husband needs encouragement, too! NEVER forget to say thank-you. ALWAYS acknowledge the sacrifices he makes on your behalf. TRY not to let your relationship revolve just around you; even though your Pain is a main determining factor in your life, there are other factors to keep in mind, too. When you are strong enough, say “YES!” When you are not strong enough to attend an event, but also not in debilitating pain, tell him to go places without you. When he has to stay home and care for you, acknowledge his huge sacrifice. Tell him how much you appreciate his help. Find ways to treat him, to honor him, to love him and to make him feel special.

Lastly, The New York Times published an article titled, “Disabled Spouses Are Increasingly Forced to Go It Alone” that cited that couples who are married where one partner has a disability are more likely to divorce (Kilborn, P., 1999). What ever happened to the “Through sickness and in health” vow taken on that serendipitous wedding day all those years ago? To remain a Team, to continue Being One, BOTH parties need support. Gage and I meet with our Pastor on a regular basis to discuss how to better strengthen our marriage that is under such stress, how to ensure that – even through the tough times – we continue to BOTH put one another’s needs first and how to carry each other’s burdens. My Pain Counselor has suggested that spouses need as much emotional support as the chronic pain patient. That support can also be found through: counseling, support groups, a good friend/confidant, online chat groups, your church, your family, your community. Whatever avenue is chosen, it is essential that both spouses recognize the need for help carrying these burdens that have been handed to them.

There are many ways that a person with Chronic Pain can be loved and helped by family and friends. Stay tuned for what friends and family can do in this multi-part blog series!