“I slap this perfectly sculpted mask onto my face every single day. It is one that has a perfectly carved smile and warm brown eyes. One that is well kept and put together. One that gives the impression that I have skillfully figured out my life. One that tells the world – this woman is happy. This woman is whole. Her life is complete and her heart content. She is courageous, resilient, and strong. My mask speaks out, “I’m Okay!” All while muffling the screams from inside, “I AM BROKEN! I AM BROKEN! I. AM. BROKEN!”…In the solace of my home – I remove it. Tears that have been contained for days and weeks are released and pour out in uncontainable amounts. The scars and trauma are again visible, if only to myself. My truth is revealed. Only I know the depths of that truth. For it has settled in a dark abyss and the world is too afraid to climb down with me. My mask hides how truly deep my pain runs. It hides it to protect me from the judgment that I should be better. This mask is my most useful tool – yet I despise it most.”
Oh how “The Mask ” posted at Still Standing Magazine resonated with me when I read it! Their Mission: “In the face of loss and infertility, our mission is to show the world that we are still standing. Holding fast to resilience and hope. Our mission is to help you embrace life for everything that it is after experiencing the loss of a child or infertility.”
Arachnoiditis Survivors and others living with Chronic Pain and Illness work to maintain a similar Mask. No matter the source of our Pain and Grief; Resilience and Hope Inspire Survival and LIFE.
The Mask provides a temporary illusion of inclusion which, for a brief time, keeps the loneliness of reality at bay. But that isn’t its only purpose.
“In many primitive societies, to wear a mask was to invoke a supernatural being. In Africa, masks were used to ward off enemies, to summon ancestors, and in rituals and ceremonies that marked alliances between tribes. Masks, particularly those depicting animals, were also used as a means of denying personal identity, thereby bringing the wearer closer to the paradisial state.” ~Fontana
That Supernatural being is often the ONLY thing that gets us through the day. When It leaves me feeling trapped in the loneliness It creates; Making Art, even when I use symbolism which is not understood by all, helps me un-glue the facade cemented to my soul. The Mask is a duplicitous mate.
No Matter the Cause, Maintaining the mask ~from the body language, to The “Smile” to the Hair ~that we hold up for others can be extremely exhausting…but, I have often asked myself, “What WOULD I do instead?” The alternative is even LESS appealing. MaintainingThe Mask sometimes becomes a temporary link that anchors us to the edge of Survival until we are strong enough to move on without it. Over time, though I still have days where I resent the effort; I have become thankful for my companion, The Mask .
The Rest of the Art Every Day Month Series of Posts are Here and have been brought to the public via the support of my patrons.
TILT: In pinball, “The tilt mechanism registers motion applied to a machine; if too much motion is applied this way, the game is said to “tilt” and the player is penalized (losing the ball in play, the bonus points or a combination of both are the most common penalties). Some EM machines void the game of a player when tilted.” ~Glossary of Pinball terms
I am pretty sure we all have days that “TILT” us. Here are a few tips to help make sure that you aren’t out of the game. These ideas come from the knowledge that pain is a daily factory.
1) Wake up ~ Yep. That one is important. It isn’t always the pleasant feeling we’d like it to be. I have had mornings (and nights) in which all I can think is, “Really? I am awake AGAIN?” It took a long time for me to accept that it is OKAY to be awake even when “normal” people would be asleep. Although I know I NEED sleep, I have come to recognize that the more frustrated I get about NOT sleeping, the less likely I am to actually sleep. The lure of the escape of sleep is also something to wish for and pray for when coping with chronic pain…especially, at the extreme levels associated with arachnoiditis. But, believe it or not, accepting your wakefulness eliminates the stress (and related pain) that comes with fighting it. The Price of Pain is that we question the value of being awake in ways we may never have done before. Each day we are given is a blessing. Sometimes, the blessings are VERY HARD to find but, they REALLY are there. Wake up so you don’t miss them.
2) Love ~ Love yourself, your life, the world as often as you can. Your pain is NOT punishment. You deserve to wake up and tell yourself, “I Love You.” Out loud, in the mirror or laying in bed with a gentle acceptance of all of the aching parts of yourself and for the strength in the parts of you that are working daily to compensate for that; say it, “I Love You for all that you tolerate, for all that you are, and for all that you will be.” Say the words you wish you could hear from others. Give this gift to yourself. You deserve it. Find out more about ways to give yourself this gift.
3) Gratitude~ CONSTANT PAIN can make it difficult to come up with this one. If you start with just ONE thing, big or small, it will eventually lead to others.This doesn’t mean you stand up and yell, “Oh Thank You So Much for ___-!” This is a subtle, quiet, gently thing. [Unless of course, you feel so inspired that you must stand up and yell. In which case, by all means go ahead and do so.] Even if your whisper of gratitude is about the exact same thing every day, recognition of that blessing is important to your quality of life. In a notebook, or just in your head- if getting pen and paper hurts too much- be thankful for something in your day. From my journal: “At least I didn’t throw up on anyone today. Nearly, but I didn’t. That was good…I smell honeysuckle out in the yard. That’s nice….The paisley print here looks like little ameobas moving through a blue mist. I am glad we got this comforter. It’s soft and warm and doesn’t slide off the way the other one did.” There is no judgement in this gesture of gratitude. The things you are thankful for now, may be extremely different than the things others would mention.
4) Know Your Power~ Even in the midst of excruciating pain, WE get to decide the shape of our own day.
Know yourself. It took some training, and I still forget sometimes but, in the worst moments it always helps me to ask myself, “What can I do right now that is good for me?” “What can I control in this moment?” “Is there any beauty here that I can focus on instead of _____?” “What do I NEED right now?” Know that you CAN ask. Ask for help when you need it. This can be tough when I feel like my pain and situation will NEVER allow me to be able to repay the “favors” given. I am an independent person by nature and asking is always a challenge. I HATE it when I cannot just do something myself. I have come to recognize that I am stronger when I let go of the hate for the necessity of it and ask for help so that I have the ability to do the things that I CAN do instead of killing myself to try to do the things I can’t or shouldn’t.
just ask
Know that you can set boundaries and expectations for the people around you. I had a list for my family of the chores and tasks that I just needed them to take over. It just took too much out of the quality of my day to continue to try to do these things. I posted it near the kitchen sink and we talked about it. I had to let go and trust that even if they didn’t do it “my” way; at least it was getting done. (In case you’re wondering, I suck at this and it was NOT an easy transition for anyone. We still struggle with it when they come home from their assorted young adult adventures. But, it did, eventually, make a big difference in the quality of my life with Arachnoiditis.) Doing this also gives them the power to help you when they really don’t know what to do. It eases some of their own sense of helplessness in a difficult situation. There are different degrees to which each family member is able to assist in this way. Age appropriate chores are a good place to start and can help strengthen Family Focus.
5) Simplify~ As important when living alone as it is when living with others. De-clutter your environment, your expectations, and your obligations by asking, “Do I/We really need this? Want this? Use this? ~what purpose does it serve?” These are thoughts and issues which I addressed when I forced to be horizontal. I make a LOT of lists when I am laying down. Some get implemented, some get thrown out. However, all of them distract me from pain,frustration,boredom, and idleness DURING the laying down part. There are many searchable resources online for this. Since I already owned it, I went back to, Simplify Your Life with Kids by Elaine St.James. It is a great resource for identifying some of these areas that may be affecting your life. I excluded and/or delegated some of the more physical tasks described in her book. Have one place in your home that is not full of information, obligations, or life debris. Allow others to join you there as you see fit but, be sure it is understood that THIS is your simple sanctuary. It is a place to heal and pay attention to what your body and mind need RIGHT NOW.
6) Know Your Pain Management Resources and Health Options
Adaptive Devices & Modalities
Holistic Healing Practices
Experimental Treatments
Alternative Medicine
Research & Discovery
Behavior Modifications
Spirituality and Healing
Healing Art Activities
Opportunities for Social Connection
7) Go Gently ~ “When it comes to committing to a daily practice: no matter how long (a week, a month, a year, or forever) we are going to be confronted with all manner of negative thoughts that interfere with our intention….Yes, we can show up and face the blank page, without being mean to ourselves.” ~Lisa Sonora on Creative Practice. The same is true of daily practice for Coping with Arachnoiditis or any chronic illness or pain condition. Approach new plans and new habits with gentleness for yourself, those around you, and your environment. It’s about meaningful moments not forcing fabulous-ness.
8) Adapt ~ Lovingly Acknowledge Your Limits Today so that you might expand them tomorrow. Recognize the ways in which you can alter your environment to suit those limits. Discovering adaptive furniture/devices, Changing how often/how long you stay in one position, moving differently, storing things you use most in easily accessible locations, etc. The little things can make a big difference. When Change Chooses Us, it’s BIG. But, little adaptations afterward that may seem so simple and obvious you don’t know why you didn’t think of it sooner can smooth the path for bigger goals. (I.e.I have a dog. I love him. I HATE mopping/cleaning my floors because of the way that it triggers all of the ick in my body when I do it. What I HATE more than mopping~ Dirty Floors. To minimize the effort involved, my dog now has his own set of small towels strategically placed by the back door with a hook to hang the current one on. His feet are wiped every time he comes in the house. Pets will adapt, too if we show them how. Pets can also HELP us adapt. Their are many known Health Benefits to Pet owner ship but, it is a physically demanding responsibility and long term commitment. Be sure you know all the facts before seeking a NEW pet.)
9) Celebrate Your Achievements~ Set Goals “Start where you are and with what you see.”~Ghandi ONE of the most devastating discoveries for me after Ararachnoiditis was realizing that in my injured state, it was extremely painful and complicated to paint or make art of any kind. Through all of my life’s changing rhythms, anytime I was hurt, angry, frustrated, confused, disillusioned, or lost~ two things had remained constant; the ability to make art and the ability to walk it off. It seemed I no longer had either of those when I needed them the most. As a consequence, my goals shrank and became more immediate.Journal entry: “Today, I crawled to the toilet by myself.It only took 27 minutes to get back to the bed.” The day before I had been there 45 minutes before I dared to try to get back to the bed that was approximately 15 feet away from the bathroom. Although I was painfully aware of what was lost, the ability to see this difference as an accomplishment instead of allowing myself to focus on all that I had done before but couldn’t do right now was truly a blessing that gradually transformed into discovering new ways to do the things that I wanted/needed to do. My reward for this achievement~ I was able to pee in private.
Later, I would reward myself with things like a slumber party night with my teen daughters (they would come in and lay on my bed with me and we’d watch an episode of Friends, play line-drawing and doodling games, or if I was feeling particularly competent we would play Scrabble…sometimes, they would just tell me about the way they spent their day), or ~as advised by another Survivor~ I’d get some pretty pajamas because being in bed most of the time, these were more comfortable than regular clothes but, made me feel like less of a sick invalid.Eventually, I had day pajamas and night pajamas and threw away ALL comfy clothes that had any stains or holes as these made me feel worse about my situation. {Read as: I asked the kids to bring me a trash bag for my room. Each time I changed my clothes, if I reached for the old-faithful sick-day clothes; they immediately went into the trash bag. When I was able to manage the stairs myself, this bag went down ahead of me and eventually made it to the dump in the next trash run.}
10) Have a plan for the next TILT!~ To cope with the two steps forward and three steps back phenomenon Remember you will REGRESS. There will always be good days and bad days. Life is like that. Wander Land cards are good way to plan for those regression days. Don’t be afraid to ask for help on these days. Make sure the people you trust who are close to you know that this might happen. If you don’t trust anyone in your immediate circle not to judge you harshly, reach out to one of the many support networks available on social media, call your local hospital, patient advocate, or counseling program to find out if there is a real time chronic pain support group near you. There is a fine line between the benefits of solitude and the crippling effects of isolation. Know where you are on that line so that you can be prepared the next time you TILT!
BONUS TIP: Any day is a good day to Make Art, Look At Art, Listen to Art, and Appreciate Art.
This just in! The ice is falling off of my Frozen Muse!
Those are NOT tears today. Look closely. Teeny-tiny trickles of creative energy are beginning to FLOW beneath the surface of her frozen facade.
Un-Frozen
Winter wonder, in all its fluffy, frigid, crisp clarity lands me in some difficult paths of self-assessment and sometimes leaves me wandering aimlessly away from my intentions in an effort to relieve physical discomfort. The discrepancy between my scheduled goals and actual achievements can be quite disheartening at times. This is when it is crucial for me to visit activities and inspiration which remind me to:
It is a struggle for me to accept what I CANNOT do. Sometimes so much so that I forget to see and celebrate the things that I CAN do and am doing, RIGHT NOW. This mind set can become a slippery slope for an Arachnoiditis Survivor. I have added the above quote to my Wander Land Cards so that I don’t forget to accept where I am right now instead of beating myself up over that which I have not yet achieved.
However, our Project Deadlines are looming large in my mind. The CALL FOR ENTRIES to Survivors to Register for the First Public Art For Arachnoiditis Project Exhibit ends February 15, 2015. Thanks so much to all who have submitted entries, supported the project, and participated in the Arachnoiditis Survivor Portrait Project. Please keep doing what you are doing! Let people know that we still need MORE entries to make this a show worth visiting.
The last few weeks have been a harsh reminder of lessons learned that I forgot to remember.
1. Don’t over do it! Listen to your body. Stop BEFORE it tells you that you must.
Relocating to a more suitable climate might be realistic and more than beneficial for some Arachnoiditis Survivors.
Although I often fantasize about warmer climates, the benefits of living two blocks away from my only Grandchild far outweigh these balmy whispers and the wintry obstacles. The superglued fragments and the few unbroken places remaining in my heart would be shattered by the loss of this wonderfully uplifting, simultaneously challenging, Grandma experience. Appropriate planning allows me to accommodate and accept winter so that I can keep what matters most.
4. My Living With Arachnoiditis Daily Plan (especially in winter) should include space for unexpected visits, emergencies, AND recovery time. If none develop, this is just free time to do more art.
Cabin Fever Can Be Spiritually Crippling. In the grip of an Upstate New York January, visitors are welcome but require vertical time. I forgot to leave time for this in my day.
The unexpected New Year’s Eve death (read, “winter burial”) of Smoke, our 14 year old cat, was not only sad but, was, potentially, a horrendous physical set back. Thankfully, the weather was oddly warm up until that day and the ground was sort of easy to manipulate. Life is full of surprises. Plan for that. Malachi’s special daily doggy needs combined with his unexpected medical maintenance this winter equals mass miscalculations and manipulative juggling of the once-manageable time table leading to virtual mayhem… in my mind. Did I also forget to mention that PERCEPTION is 9/10ths of the law of survival?
5. Self-employed/stay-at-home/ housebound people, NEED tools, time, and space to relax, too. If you have ever worked from home, you know the challenges of leaving your work AT work. Designating a physical space for work and relaxation respectively can be very liberating. As a youth advocate, I learned that I served my clients best by leaving THEIR needs behind for a little while. As an Artist and Studio Owner, as well as, Survivor and Advocate for the Prevention of Spinal Adhesive Arachnoiditis; I have found this to be equally true.
Orchestrating this becomes an exercise in actual and virtual compartmentalization. Although very physically demanding, in the long run; FINALLY organizing my live/work studio space so that there is tangible/physical space…with room to be horizontal or vertical as needed… set aside for:
family & visitors, my work, and ME (apart from my WORK)
was a major physically demanding but life-altering step that I SHOULD have taken when the weather was warmer but, for the sake of my sanity and creative productivity; could NOT wait until it warmed up again.
Horizontal Work Station that is NOT my bed.
During the first few years of crippling pain, and even as recently as December 2014; the need to be horizontal so often sometimes leads me into the bad habit of having my entire life occur in my bedroom. It is/was never unusual to see books, papers, laptop, journaling projects, and art supplies stacked and piled around me on my bed and all over any flat surface near it. I think, even prior to arachnoiditis, my workaholic personality sometimes lead to this.
For me, this is NOT a good thing. It all becomes jumbled together. Eventually, I lose the ability to focus. Since CSF issues make focus a challenge at times anyway, built-in focus zones are incredibly beneficial for me. Structure is GOOD. When I keep designated tasks and objectives in designated areas, it allows me to always have a healing place for RETREAT.
With the launch of the Art For Arachnoiditis Project in March, by the end of 2014; my existing workstations had just started to become too heavily merged with my down-time locations in my small house. At the end of December I was so overwhelmed by the inability to get away from the endless to-do lists that no art was being made. Frustrating for me to admit, even with the legit technical difficulties at the time; The Survivor Portrait for Melanie Lamb came to a screeching halt.
6. SIMPLIFY! and know thyself.
As long as I am the only one doing the work, (generally my selected mode of operation) my house/yard/life will NEVER be as clean/organized/tidy as I WANT it to be. Just when I think I cannot minimize or downsize anymore, I realize there is still room for some elimination of unnecessary material distractions. I also know that, for me, the more organized the existing items are, the less distracting they become.
This even applies to lawn maintenance. Over the summer, I realized that if I grow edible weeds in my yard, there is less lawn to mow and it changed how I see that unmanicured “mess” that it becomes when I am unable to maintain it. No longer an eyesore, it becomes a renewable resource. Not sure my neighbors agree but, it is what it is.
7. LET GO! Remember that it is NOT your job to store, manage, or organize the possessions, obligations, or responsibilities of others.Let them clean up their own mess so that you can clean up yours. It’s good for all of us.
8. FORGIVE YOURSELF when you are unable or forget to do these things.
People sometimes just don’t get that yes I make sacrifices daily to live and do things but will pay for it greatly. And that normally causes me to crash and have a few days rest. Yes when I push I can do something I really set my mind to but it comes with a price. When I say no, I can’t do that, yes, I may have done it in the past, but i paid for it dearly! And it’s not that I don’t want to, it’s just that I realize my limits and capabilities.
Yes, it seems like I always do try and do the fun stuff, but don’t push myself as hard to do things I don’t find as important as making memories and living an enjoyable life. And yes I say no to stuff that is normally everyday stuff because I’m usually paying for just trying to be there to have somewhat of a life. It just doesn’t seem to make the connection there. This is when the Spoon Theory comes in handy. But some people just don’t listen no matter how many times you tell them, and won’t take the time to read and understand.
Yes, I do have new explanations for symptoms and pains, because yes, I am always learning new stuff about why I get this pain, this symptom, why I should avoid this because it leads to that, I need to do this now because it can cause that, and I do this now or don’t do that because it’s happened in the past and I’ve learned my lesson, and no I have absolutely no idea about the future. I live in the moment. I have absolutely no choice.
Yes I’m having to learn how to do things differently, and I’m learning constantly my cans and cant’s. Yes my moods change frequently because I can feel a little better today than yesterday, which made me feel like I accomplished something, but tomorrow I’m going to be cranky and depressed because I’m going to be feeling absolutely awful from doing the smallest things, and yes I’ll be full of emotions because it makes me realize just how much my life has changed.
Yes sometimes my mind is occupied so I forget about what tomorrow will bring but the same thoughts might scare the living crap out of me tomorrow because I’ve actually had time to be in my head for a while and face whatever tomorrow may bring.
Yes all of this does exhaust me, confuse me, depress me, frighten me, and no I really don’t understand things any better than you do. Yes you do hurt my feelings when you scoff at me thinking I can do something in the future that I wasn’t able to do yesterday, and can’t even get out of bed today.
Sometimes you just don’t realize that sitting and resting like a “normal” is actually really hard work and takes spoons just as much as walking or trying to do something. Yes, I will need to lay down and rest just as much from sitting and doing “nothing” than I would walking and trying to do “something” , and sometimes it will actually take sleep to recover and I will be absolutely wiped out the next day from doing a lot of it. Sitting and watching a movie feels like I’ve just run a 5k.
And yes spoons aren’t automatically replenished in the morning. You have to earn them back by resting. Some days you only earn back 3 spoons. And finally no, I didn’t ask to be this way, no I don’t like it, yes if I had to choose I wouldn’t do this over again, and yes, I will try to make the absolute best of things that I can.
Multiple Work-Stations in the studio help to prevent arachnoiditis pain flares.View through the opening of the Ostrich Cot
Standing to paint
“Many adjustments must me made in order to continue living a healthy, productive life after Arachnoiditis. Willingness to adapt is crucial to survival. Eventually, I learned that rehabilitation is somewhat synonymous with the concepts behind the term, downsizing. ” ~slk
Draft of Book Cover
Working in creative non-fiction, Still Standing, Sometimes is a story about Sheila’s journey into the world of spinal adhesive arachnoiditis & her contact and participation in the Arachnoiditis Survivor community. This pending publication depicts the unexpected meeting of dedicated and determined daily heroes.
Preview Sheila’s experience and perspective about:
PREVENTION, SUPPORT: FAMILY & FRIENDS CAN…, EMPOWERMENT THROUGH BEHAVIOR MODIFICATION, VOCATIONAL REHABILITATION, COPING WITH THIS ADVERSE OUTCOME, MISSING PIECES
Survivors who would like to contribute written or photographic portions of their own Arachnoiditis experience to this publication can comment below or contact Sheila at SheilaLynnK Art studio by email:
sheilalynnk@yahoo.com subject line: “Add my story”
Please be sure to list names of authors and/or photographers for listing in the final publication.
Remembering Lily in the morning ~slkRemembering Sophie helping out in the studio ~slkMoving Day/Downsizing=big changes ~slk
Time stands still as it passes us by
parallel lives
wondering why
wait and watch
get to know
rehabilitation moves so slow
sweating, shaking, holding time
in trembling hands
pages align
unglued
the muse
falters and flashes
adhesion brings ashes
stifles the spark
breathe
glow
struggle to know
adjusting the pace
wasn’t a waste
resigned, refined
a new design
today, tomorrow
tainted with sorrow
blessed by hope
alive!
~slk–
As I assembled the work for A Round Now In A Square Time I was forced to revisit the phases and stages of my own physical rehabilitation. The internet has the power to be an incredible rehabilation tool for conditions which leave the patient isolated from society. Parallel lives meet in the support groups there. They share resources and frustrations. They grieve in empathy for the time that was and the now that is. Together they inspire enough hope for tomorrow because there is strength in numbers. The internet links us to the outside world while we virtually live within the confines of adhesive arachnoiditis. Until we adapt and find a way to live independently in real time we are forced to survive vicariously and at the mercy of the people around us.
Active members of Life With Arachnoiditsand Arachnoiditis Society For Awareness and Prevention kept me in touch with virtual humanity while I was re-defining my physical presence in the world.
Art For Arachnoiditis 