Tag Archives: Survivor

Eight Lessons Learned and Remembered

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.


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:

Day 12 image from Lisa Sonora's FLOW 30 Day Journal Project #30DayJournal
Day 12 image from Lisa Sonora’s FLOW 30 Day Journal Project #30DayJournal

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.

2. Plan wisely. Time management is key.

3. Be Realistic! Winter is the WORST time for me. Over-extending during the holidays is a mistake. It is best for me to set aside career/studio projects and goals until the third week in the New Year. For my own personal best results it might be good to make January a month of hibernation. So that I can remain Sustainably Creative. 

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.
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.

From Christina Lane
From Christina Lane

Have you learned anything that helps you manage living with arachnoiditis? Please tell us about it here.