“&”

“&”

People frequently ask me how I’m able to smile so much when I have such intense pain. The answer resides on my bookshelf.

She’s a glittery pink ampersand, (she looks like this &) the symbol of one of my most central values. We’ve had an intimate relationship for decades and, without her, it’s possible I might not even be here today. Amps is surrounded by books on meditation, writing, health, poetry, psychology, and religion. There’s some fiction in the mix too, but Amps is in true company with the stuff of real life. She’s a spiritual guide within her own right.

Elisa Friedlander

When I was a teenager going through one of those calamities of adolescence, my dad would sometimes remark on how cool it was that I could still laugh in the midst of struggle. That stuck with me; it taught me that even when things seemed unsurvivable, there was always an “and.” Later in life, within the context of my work as a psychotherapist, I noticed many people didn’t grow up learning (either directly or incidentally) that two seemingly divergent realities – such as pain and joy – can co-exist.

In the throes of intense physical pain, the ampersand can help us have a better quality of life. We can become so focused on wanting to come down a few notches on the pain scale (you all know…that obnoxious tool that boils the complicated ordeal of chronic pain down to a number) that we forget what exists outside of our bodily suffering. We yearn to move away from “9,” in hopes of landing somewhere in the middle of that extreme and an unrealistic “1.” In the process, we can forget there’s more to our story.

I can’t go hiking anymore, and I’m mesmerized by the birds on our deck.

My body hurts every day, and I have hope.

The pain sucks and reading the Pain Report makes me feel less alone.

My pain is getting worse, and my friend distracted me for a brief time today.

Mornings are getting harder, and I’ll make changes in my routine.

I’m sick of this pain, and I passionately love my spouse.

I insist on giving voice to truths other than my pain, and it’s not easy. My body speaks loudly, through the language of CRPS (Complex Regional Pain Syndrome) and an unruly, progressive spine disease. My central nervous system is like a journalist, reporting from the moment I awaken each morning:

Shards of jagged glass scrape Elisa’s entire spine. Burning hot razor blades slice into most of her body. Freezing metal vices crush her bones. Parts of her swell with shades of red, blue and purple. Ah, we have a clip: Watch as she attempts to get out of bed. She’s moving like a 90-year-old woman post-surgery after the lidocaine has worn off. It will take hours of self-care before she’s able to function. More later – when we check in with “Afternoon Elisa.” Watch this space.

My body’s personal journalist (yes, she has the voice of Rachel Maddow), is accurate, yet she only has access to part of the story. It is my responsibility to ensure that my spirit has it’s say as well: Grief – and gratitude. Disappointment – and hope. Frustration – and love. Immobility -and imagination. Fear -and movement. There is always more than one truth. Yes, I have excruciating pain – and I have joy. When the words “Yes, and…” unite, they become the power couple of the English language.

When CRPS flares up (or worse, creeps into another part of my body), I feel sad and frustrated; it renews my sense of loss related to my illness. Even then, everywhere I look the leaves are transforming into vibrant fall colors. I get to go through the normal and necessary process of grief, and I get to be awed by the change of seasons en route to my doctor appointment.

When we make space for experiences that don’t naturally gravitate toward each other, we do more than “listen to our bodies” (good advice, but only part of the conversation). We allow our spirits (that fire-in-the belly part of us) to speak, meanwhile quieting the demanding voices of our bodies.

Try this: When you’re struggling to see anything outside of your physical suffering, imagine your pain as a precious and breakable object. You’re naturally holding it with two hands, tending to its vulnerability with care and protection.

Then, imagine moving the object – your pain – into just one hand. You’re still holding it with awareness and support. Look at it and say, “I’ve got you.” Now, take a moment to see what you freed up space for in your empty hand. If it’s something essential to your spirit (creating, loving, being in nature, playing with your dog, etc.), the weight of pain on your life will feel a bit lighter.

So, go ahead, befriend the ampersand. I think you’ll find this sexy, curvy little symbol an alluring gateway to endless possibilities that make each of life’s moments better.

Thanks for reading. I need to bring this piece of writing to a close because this weather is causing a flare…and… the smell of the rain is intoxicating.

What, besides your pain, are you holding?

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Authored by: Elisa Friedlander

Elisa Friedlander is a psychotherapist who volunteers as a Chronic Pain Support Group leader, advocate, and community educator. She loves writing and living in Ashland, Oregon with her wonderful wife and ridiculously adorable rescue dog. https://www.ElisaFriedlander.com

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Katie Olmstead

Years ago, my pain management therapist taught me about “and.” It has been brilliant and helpful and I have shared it with many. I have constant pain from CRPS and degenerative spinal stuff AND I dance many nights a week. I LOVED your metaphor of moving the pain into one hand and opening the other for the “and.” I’ll remember that. My reminder takes the form of a stone on my desk, right here, with “Yes!” inscribed on it. I also have a wooden little sign that reads, “Giggle.” Talismans.

Karen

Thank you for putting into beautiful words…exactly how I feel. I began my journey of chronic pain at age 12 with severe ulcerative colitis. I am now 59 and have collected many more diagnoses along the way. Including CRPS, DDD, fibromylgia and Ramsey hunt syndrome to name a few. Reading your beautiful story reminded me that I am not alone. I got this far because my pain and joy are next door neighbors. I have learned I can’t live without either so we must get along in this life. I thank my mom for instilling strength in me at the young age of 12. I’d be sick and in bed just wishing I wouldn’t wake up. She’d call up to me…you’re friends are here…get dressed and just try! A little fun is better than none! She never gave up on me. Such a wise woman.

Mindy you are inspiring and I love the way you think. I find relief for my spirit in the Lord Jesus Christ and singing his praises for I know He never leaves me alone. But even in that it is hard to pretend that my pain is held in one hand. Been praying a lot lately and I know my pain is not my fault and I did nothing wrong and am not dirty. I do find joy in the things that God created. One of the things that brings me joy is seeing the shadows play across my kitchen floor in the morning from my arts and crafts missionary chairs that go with my table. They seem alive and vibrant. I am an artist so I notice things like that. I also find joy in the deer that come three feet from me because they trust me. My one doe even brought her spotted fawns to me this year to see. I was surrounded by mom and babies three feet from me. That is joy and one of the pleasures my God allows me. But my pain remains and it gets worse all the time. I know God heals but sometimes He does not. I finally got approved for a marijuana card two months ago but could afford to buy it only once so far. In nine months it is the only treatment I have had but cannot afford to buy it much. I was tried on the edibles that you put on food and the spray under the tongue. Rosalind what form has helped you so far? How do you get past a urine test? I saw a PA in a doctor`s office two weeks ago to be considered for a ganglion root implant to try to help with some of my pain, and on Nov. 29th. I see the doctor to see if I qualify. But I am not going to tell him I have the card and have not taken any marijuana for over a month. If this doctor does not work out I will not care any more if anybody knows about the card because I am going to do what is best for me. I feel the card is my last hope to hang onto concerning my pain and not have to be treated like a criminal. If the doctor finds out then he finds out. I am not giving the card up, PERIOD. Tired of living in pain.

Tom Sayen

Thank you for writing this beautifully told story!

These exact words could have been taken straight from my journal. Dialectical thinking is how I get through my days/weeks/life. Having CRPS along with a myriad of other pain disorders forces me to look at things from different angles. If I didn’t I would not be able to face the day.
I am always questioned how can I be dressed, have make-up, jewelry on, and be out at a function if I am in so much pain? My answer: I am in extreme pain AND I am so fortunate that I have places to go rather than sit and cry in bed all day long.
Thank you for writing such an important cultural piece about pain.

Dr boris

I am hating the severe pain today & I am inspired by Elisa’s writing and way of thinking.

Thank you all for the comments – and for being so supportive of your peers who also live with pain! I don’t have the energy to respond to each…. but please know I’m touched by your comments, and in awe of your resilience. Wishing you all tons of ampersands, and lots of extra self-care over the holidays! 🤗 Elisa

Rosalind Rivera

Everyone in the pain community, I want to confess that I have begun using Cannabis to help with this excruciating and never ending pain with no other solution in sight. I’m terrified anticipating a random urine test but my Cannabis prescribing doctor has told me how to get around this. Of course I will be in tremendous pain for about 30 days before the urine test but there are only about 2-3 urine tests required of me for the year.
I realize how this letter sounds but it’s what I have resorted to out of sheer panick and feeling that I have no other option.
The DEA will never backtrack. They will always win, always!

SHERRIE D JOHNSON

Love this article!!! I have RA and I too have hope. Thank you for writing this for ME!

Cheryl Johnson

Thank you Elisa, beautifully written!
Mindy, I hear you! You are not alone! I was a CNA working 80 plus hours a week. I am the Mom of 2, girl and a boy. I was injured at work when I was 27. I had a patient fall off the hoyer lift and my back broke her fall! I was diagnosed 2 weeks later with a spinal fracture! I was in so much pain and I was really p.o. that it took 2 weeks to take an xray! I finally had spinal fusion surgery 10 months later. 6 months in a rod broke and it was “elective” surgery to have the broken hardware removed! Its really a long and said story, this coming June will be 25 years of hell. People have looked at me and some even argued with me about being disabled, yelling at me that I shouldn’t need handicap parking. Etc. Even my spouse and parents were saying that I need to just get over it! My now ex spouse accused me of sitting on my ass all day! Our son is autistic and he would argue that he was just a boy, he’ll grow out of it! I hope your family is much better than mine! As for the jerk at the store if they want me to show them my scars I show them! I also had a 3rd surgery 11 years ago that took 14 hours! I had a revised fusion front and back from
L1 to S1! Because I never really had a stable spine after my surgeries in 96.
Chin up and laugh as much as you can and cherish what you do have. There will always be haters.

Alice Carroll

Mindy, Wow, So that’s how nurses view those of us in chronic pain. Very sad. I’m afraid this country has moved from a culture of altruism and caring (the 60’s) to one of the cheater, liar and bully. It seems that folks want to believe that anything bad that happens health-wise is your own fault. You! Must have done something wrong, you don’t live right and “Oh stay away it’s not contagious is it? Or worse yet, You’re a cheater because you’re trying to game the system and no longer want to work or are a druggie seeking pain meds so you can get high. This disgusts me.

I used to have a lot of respect for nurses. How day after day they could help the sick and not seem to get down themselves. But there were always some who were cranky or plain angry and suspicious and I couldn’t figure them out. Now it seems patients are looked at like an enemy. What does this say about our society? What happened to compassion, caring and understanding? Are we just a dog-eat-dog cruel country where one simply steps over another- uncaring? I do know that many treat their pets better than their fellow human beings.

Mindy, I wish you the best. I hope you can find doctors to help you. You should be able to speak their language and with your knowledge of the medical system be able to navigate things a bit easier than some of us. Please stick with us and help us in the fight to keep pain reliving medications available for those of us that need them to live more productive lives.

Li

I needed this today. It’s getting ready to rain. I helped some with planting sod. I did the easy part. Now a bad flare up. CRPS is not my friend today. Swelling that’s so tight that my skin split open. And Yes .. this too shall pass. I will put it all in my other hand and now can put other things in my good hand.

@Elisa, this is a great example of what I’m famous for saying ‘there’s always a
Positive out of a negative…you just have to look for it.’ Count our blessings and find the beauty around us in the midst of pain and hardship. Somehow..it does help if even in increments of moments.
You taught me a new word…I had to google ampersand! in order to understand your writing. Keep strong warrior!

@Mindy, halfway through your post I said to myself ‘I bet she has Lupus’ then… you wrote that you did! I too was a nurse, for 31yrs and naturally never understood the pain my patients endured until I became a person with CP after an auto accident, failed spine surgeries etc.
In the midst of these painful years I was told that I also had Fibromyalgia.
But then in July 2018 I was Dx’d with Systemic Lupus! It was never FM to begin with. I understand the difficulty of what you are going through. Lupus is a very tough disease to live with on top of other issues. Hang in there, know your body well and keep well informed about the disease and management.
Hugs, Maureen M.

JaneF

THANK YOU, your Spirit and Joy are uplifting, yet mindful of enduring pain day after day after day. I have CRPS, in both of my feet and legs and it appears to be moving into my hands and arms, cold weather is NOT my friend. Yet, we have ONE life and we can choose the “AND” or a “NOT”, but I am so blessed to find JOY in the “&”. Thank you again.

Kristen

Thank you! This was one of the best Articles that I have read in awhile.Reminds me even with this excruciating pain daily that it’s still possible to find some joy.Even if it’s sitting on my porch and take in the nature that surrounds me.You have inspired me to try and focus on some positivity even if it’s for 5 minutes.I get way to distracted and negative living in this Pain 24/7

Bill Viverito

Best blog I’ve read in months !

Denise Bault

Thank you for a wonderfully uplifting article! Being distracted by our pain and suffering, we often forget the abundant joy available to us in each and every day There is soooo much more to life. Thanks for the reminder!

Bram Judy Cast

I can relate. I always think,” What am I thankful for? I think this while I’m having a pancreatic attack. I think of all I’m happy to have. This really does help me.

Mindy

My first time opening up To anyone so I’m not sure who will read . . The weather affects me too .,I remember thinking people exaggerate their pain when the weather changed and I was so guilty of patient profiling and thinking that they couldn’t possibly be in that much pain if their well groomed and looking good on outside . I was never rude but as a young nurse I honestly didn’t comprehend until I was the patient . I went from running and working 16 hours and then started getting kidney stones a lot and just one thing after another , I felt the Drs didn’t take me serious because one did say my heels and makeup made it hard for them to read . It’s like everything I thought came back on me . I had emergency gallbladder surgery and it was the first surgery I ever had . Things went terribly wrong and nothing was working . I haven’t been the same since . I went Dt after dr , they seen my fevers and lymphnodes swollen and I had a rash in my tanning bed . I got so depressed to where I couldn’t run our family business . I was in nursing and went to agriculture and I always had to take something for pain like ultram or Advil . As 2016 rolled around I went from 148 lbs to 98 lbs . I got lymponapthy and sphincter of oddi but still the drs could fugure mr out , one minute my blood work was normal and the next minute it was out of whack . So I was sent cancer dr , heart , ect . I was finally diagnosed with lupus and other things . I’m still trying to comprehend I don’t stand alone despite I have no support from family . I didn’t even celebrate holidays last year & this year is looking same way due to major changes and with a husband who absolutely can’t be a caretaker . So I have come to the conclusion that nobody healthy gets how we each feel . I was even told in nursing that fibromyalgia was nonexistent and mostly women who had it was non working “ lazy depressed unhappy women . If you read this thank you .