"Thinking Itself Is Love (Self Portrait with Brain Tumor)"
16 x 8" mixed media
After thinking about this project for over a year, I finally made this self portrait. I used references from my MRI scans that were taken before neurosurgery to remove a benign Meningioma brain tumor. I am doing very well, nearly two years post-op. Thank you to everyone who supported me during this most trying time of my life. I really don't know where I would be without all of you.
I have spent a great deal of time thinking about how a broken heart might effect the mind and physical and mental health. Forgiveness and Love are always the answer.
"…the heart is not broken, in the sense that it does not exist before the break. But it is the break itself that makes the heart. The heart is not an organ, and neither it is a faculty. It is: that I is broken and traversed by the other where its presence is most intimate and its life is most open. The beating of the heart - rhythm of the partition of being, syncope of the sharing of singularity - cuts across presence, life, consciousness. That is why thinking - which is nothing other than the weighing or testing of the limits, the ends, of presence, of life, of consciousness - thinking itself is love."
“I believe that professionalism is the
inspiring of passion, creativity and service. When I enter an operating room I
am immediately struck by the very profound experience of the relationship
between doctor and patient. A person who trusts you with their life, their
person, their speech, their memory, this is something much more than a delivery
of a pill or a medication. It’s a very personal relationship that goes far
beyond science. To me the OR is a work of art with a choreography and an
emotion all its own. And I believe that the art part of our profession is our
creativity. The passion is the driving force or energy. It was Osler who said
that the profession of medicine is an art not a trade. The reality of that art
part of what we do becomes clear when you understand without creativity, new
methods, new techniques, we are hopelessly lost against the diseases we treat.
We must change what we do; we must improve, to do that we must use our
creativity.”
~ Robert Dempsey, MD - Art, Passion and
Neurosurgery
Craniotomy
We arrived in Madison, Wisconsin the night
before my surgery, one month ago today, and I had a nice Korean dinner with my oldest son who lives
in Madison and my daughter who took a bus down from St. Paul to be with me. I gave them gifts
and love notes and we laughed and talked about happy times. It did my heart
so much good to see them! My younger son called me that night from Galena to tell me he
was concerned about me and hoped my surgery went well. These loving gestures were the greatest gifts I will ever receive from my children! Craniotomy, even under the best circumstances, is a serious matter. I had just spent the past few days filling out paperwork for a living will and powers of attorney for health and financial concerns, just in case. To know my children love and care about me relieved a great stress I had felt for two years and I went to sleep smiling and ready for the worst outcome, but expecting and hoping for only the best!
My surgery was performed
from 7:30 am to 1:00 pm Friday February 8, 2013 at the University of
Wisconsin Hospital by Robert Dempsey, MD. My vital signs were all good during the surgical prep , in fact I was so relaxed I almost fell asleep! My blood pressure was practically too low - a defense mechanism for stress perhaps? The anesthesia and
surgical crew were all young, gorgeous, empathetic, talented and bright with
impeccable bedside manner. I kept thinking, “Am I on the set of ER or what?!”
As
I was wheeled into the operating room I exclaimed, “Fired up! Ready to go!” The nurses
all laughed and cheered me on.
Video: Robert Dempsey, MD speaks about Art, Passion and Neurosurgery, 35 minutes
It is amazing that nearly a month
post op I found the Youtube video posted above while writing this blog. In the video, Dempsey speaks of the OR as a carefully choreographed work of
art. My dear friend and caregiver Peter Fraterdeus said, “This video
deserves to go viral; his talk touches on everything that is
important in life...Really!”
The entire experience with Doctor Dempsey and
the
surgical staff at UW had a profound aura of sacrament – the body and human
spirit were respected as sacred. I "went to sleep" peacefully in the OR after I
was allowed to have time to ask every question I needed to calm my
fears. Once I was asleep, I was positioned on my stomach for the 4 1/2 hour surgery. Before I knew it, I was being wheeled out of the OR to
recovery, feeling nauseated but otherwise not too bad! I don’t recall much
from the recovery room except I was doing far better than some of the other
patients and my heart went out to them in their pain.
All
Night Party in the ICU with RN Joe Cougar
Friday February 8,
post-op – Once in the ICU I was surrounded by the relieved faces of Peter and my daughter and my oldest
son – such a wonderful feeling! My family in Chicago were waiting with my
Mom so I was able to speak with them on the phone. I even sent text messages to
some of my friends!
What a cool contact, my ICU nurse “RN
Joe Cougar” is a former cop, now he and his wife of 30 years are opening a
hippie coffee shop outside of Madison, Wisconsin, where right brain expansion
is the ultimate goal! I must get there once it’s opened!
RN Joe checked my vital signs every
hour throughout the night and asked me each time to do the standard tests for
neurological damage. Once the anesthesia wore off I noticed that I had numbness and
tingly sensations on my left side, shoulder, arm, hip, leg, foot and toes. I had
some spasms too, especially in the toes, and the left side was quite weak. It
was hard to use utensils with the left hand and the IV and arterial lines were
in my right hand and uncomfortable. Other than that I felt alert, clear headed
and relieved! I was still on steroids and pain killers and the anti-seizure
medication Keppra. Seizures can sometimes be worse after brain surgery than
before so levels are carefully monitored.
I ate dinner less than 12 hours
after craniotomy: cranberry-apple juice, wild rice blend, bland baked tilapia,
even vanilla ice cream! Joe warned me to eat sparingly but everything tasted so good! “American Pickers” was on the
History Channel on the tube. The star of the show once visited our family cafe in Galena and mutual friends had introduced me to
him. That was a funny coincidence for my night in the ICU – I had never seen the
show before because I don’t own a TV! I did not get much sleep with the hourly neuro checks and the fidgety feeling from steroids.
"Allie Anne" - Some Bunny Loves Me! From Thomas and Elizabeth
I had physical therapy two times in the hospital. My
left leg was dragging and at first it was difficult for me to walk or stand for
more than a couple of minutes. I was only able to do stairs one foot at a time at first until my strength came back. This showed me exactly where the right sided tumor had been
causing damage to my brain and the blood vessels related to my left side. The therapist
was somewhat concerned that I would need some follow up therapy if the leg remained
weak a month post-op.
Many with
"benign" meningiomas do not fare so well. Dr. Dempsey informed
me that if mine had been found even just a little later down the line, the
outcome would have been far worse. He told me that he had a difficult job
saving a couple of large and vital veins as it was, but his hand is steady and
eyes keen. He also had to use a microscopic technique to clean and save the
important sagittal sinus – and he thought he had gotten most all of the tumor cells. He
was able to use my own tissue and not a synthetic to replace the
meninges – the brain covering that was damaged by the tumor. The doctor also had to
work at saving the smaller veins in the brain beneath the tumor, I was in very
good hands! RN Joe told me not only would I have become progressively worse
without the surgery, I would have eventually died from the tumor if it
had not been found. I wish I had known of the growth earlier - there had been subtle signs for years that I
had ignored or belittled.
There was a code red incident that
night in the next ICU room, and I said prayers for the patient and the
concerned and competent hospital staff. I once more felt so fortunate that my case went well,
but my heart went out to my struggling neighbor that night and later someone else was getting
bad news about their outcome. I have utmost respect for doctors and
nurses after my night in ICU!
All
Night Party on the Neurology Wing
Worst breakfast ever! Yay!
Saturday I was moved to a regular
room in the neurology wing. This gave me a taste of what dedicated nurses
face with patience and compassion each day. Some of the neurology patients
cannot control their emotions or actions and I heard first hand some of the trials these
nurses face, all handled calmly and well. Unfortunately I did not
sleep well my second night in the hospital either – but I could tell once more
that I was one of the most fortunate patients on the floor!
My post tumor resection MRI was not too
much fun in a turban. Quite uncomfortable really and I was glad when the test
was over, but results were good! It seems like the entire tumor was removed -
good news! My left leg is numb but working well
enough, head and eyes are clear as a bell! Thank you, thank you to everyone and
especially Dr. Dempsey and all at UW Hospital!
Home a
Day Early ~ Great
Outcome!
Alice in Stitches - heading home! photo by Peter Fraterdeus
Sunday morning, February 10, the neurosurgery resident came in to cut and remove my tight bandage “turbin.” My
incision was probably about 8 inches ear to ear, and about 20 or so stitches. Peter
said it looked kind of like I was wearing a carmine colored rope headband, but
a bit further back. The stitches are pretty tight - like a long thick snake across
my head. At least the doc left most of my titanium locks along with the
titanium screws and just trimmed back the hair instead of shaving my head! I was able to shampoo my hair too. There is some swelling but surprisingly very little pain and no headaches!
Dr. Dempsey came in before noon to check on
me and said I was doing so well I could go home a day early. I am healing in every way and so filled
with gratitude!
Heading home after the tight bandage is removed from my head!
Video: “The Healing Has Begun” Van Morrison Live, 1986
Kate Friedman, posthumous portrait by Alice McMahon, February 2012 Charcoal on Mylar film
I was released from the hospital one
year to the day since we said goodbye to our beautiful talented friend and
sister, artist Kate. Be sure to view Kate's series Gray Matter. Shine on forever, sweet love!
Recovery
On Dr. Dempsey’s advice I will be
off of work for one more month, that is 2 months post op, because I still tire very easily and do not yet have the stamina to work a full day. I have occasional weakness and
numbness on the left side, especially my left leg, but the strength is back enough to walk and do stairs well, so thankfully I will not need further therapy. I had a difficult time weaning from steroids but that is all behind me now. Last Monday I had a partial seizure
and my entire left side went numb for a few moments – head to toe. The doctor increased the dosage for the anti-seizure medication and recommended I take a single aspirin per day to help thin the blood while healing continues to the blood vessels that had been compressed by the tumor. I hope I will be able to wean from Keppra 3 months post-op, and I may not be able to drive for a few months.
"Zipper head" one week post-op - some goths would pay big bucks for this 'do!
photo: Peter Fraterdeus
3 days post-op I heard the most excellent news that the meningioma was benign! I am still uncertain about how
my future may look as I heal. I will be monitored for regrowth for
years to come and yearly MRIs
will be needed for the rest of my life. I feel I am just beginning to experience the post
traumatic stress that most survivors of brain surgery often describe. I am confident and hopeful that mine will be one of the best case scenarios. However, I am moved to tears daily reading of my new
friend's struggles with meningiomas - "benign" brain tumors: their fears
while on "watch and wait," photos of their scars and swollen faces post-op, a caregiver grieving the loss of her mother after repeated regrowth
and treatments, their financial trials because of insurance issues. I
am so fortunate that things went well for me - that my tumor was found
before more serious permanent damage happened. I am amazed at the
miracles of modern medical science.
Benign tumors can wreak havoc if they grow to the point of brain injury
and surgery. More research is sorely needed
on brain tumors!
Warning Signs I Ignored
FYI –
these are extremely sight specific to my
tumor size and location, but any ongoing or progressive symptoms you may have –
write them down! Go over them with a doctor! Insist on testing if these
symptoms are progressive! I hope you will research meningiomas and partial seizure
symptoms and keep a document of your own symptoms of aging, hearing or
visual changes, falls, one-sided weakness, spasms or other progressive
symptoms.
1 Slight urinary
incontinence – I thought this was menopause related. I now believe this was from tumor pressure because the problem was pronounced immediately post surgery – but now I feel better that I have been in years!
2Tripping –
missing steps, falling off of ladders, balance issues while dancing, some days
stronger or weaker than others. I also KNOW this was from tumor pressure
because once the resection was complete my entire left side was numb and tingly and
weak. At least 5 years ago I fell and chipped a front tooth – clumsiness was
never a problem for me before then and it became gradual progressive left-sided
insecurity.
3 Left side
visual deficits which I noticed with certainty only after the tumor was
diagnosed. Before diagnosis I kept thinking I needed a visual exam or was
simply aging! I will have an eye exam once my I have healed and my vision
stabilizes.
4 Cramps and
pain in left leg when sitting on planes and in cars. Pre-surgery I often felt very
uncomfortable in close spaces and would take off my left shoe or cross my legs
trying to get comfortable.
5 These may or
may not be from the tumor but I wonder: depression, anxiety, difficulty completing complicated
tasks, difficulty verbalizing words. These symptoms seemed to come and go.
6 Seizure
symptoms – “spacing out” usually just for a moment. Left arm spasms, I had attributed
to stress, in hindsight I realize these were definitely seizure or
tumor-pressure symptoms. These were often followed by extreme fatigue for a day or so.
7 My left leg was often
"dead" asleep as if there was poor circulation. Last month, my arm was also “dead” in the
night. The pain often stayed in the effected limb a full day after an episode
such as this.
Three weeks post-op, at Rodity's in Greek Town, Chicago! All's well that ends well! Cheers!
Thanks to each and every one of
you for holding my hand through it all! The love, support, caring letters and
sharing of your own stories and trials have been a gift to me at this time. The financial support is such an
ease to my troubled mind. Living month to month with no credit and no
savings of any kind, out of pocket expenses alone could have forced me out of
my apartment. I will be forever grateful to all who have reached out to help
and I look forward to a time - hopefully in the near future – when I will once again be able
to return the favor to someone else in need. My wish is that by sharing my story in this way, I might be able to help ease the mind of someone who has been recently diagnosed with a brain tumor. There is still time to give to the Alice Recovery Fund and there will also be an art auction fundraiser in Galena, Illinois at Catherine Kouzmanoff's Miss Kitty's Grape Escape! I am so overwhelmed by the many artists and friends who have donated their artwork and other items to be auctioned for my benefit thanks to the kindness and hard work of Joe and Lydia at Pinder Pottery.
And now, I must get back to dancing at the drawing board!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
“Friendship is born at that moment when one person says to another:
"What! You too? I thought I was the only one.”~ C.S. Lewis
"To
experience peace does not mean that your life is always blissful. It
means you are capable of tapping into a blissful state of mind amidst
the normal chaos of a hectic life."
With my employer, nature photographer Thomas Mangelsen and Peter Fraterdeus,
Galena, October 2012, photo by Tracey Russett
Boxing Day – I had a partial seizure Dec 26, 2012 at
about 9pm in Galena, Illinos.
I was at home after a very stressful day at work at the Mangelsen Gallery, and making Alu Gobi –
cauliflower and potato curry with rice and waiting for my companion Peter Fraterdeus to return from his letterpress studio in Dubuque. After he arrived we shared notes about our day and we were
waiting for the curry to cook down a bit. I remarked a couple of times that I
was having an odd feeling, kind of déjà vu – but I continued to stir the pot.
Suddenly I felt very strange – I was stirring the pot but I knew I was not
really stirring, the motion of stirring was there but I was staring off into
space and the spoon was not really down in the curry – and I was trying to tell
Peter that something was wrong but I was not able to speak. He was saying
something to me but I could not reply, and then he noticed that something was
very wrong. I became suddenly extremely weak and dropped the spoon into the curry and
grabbed the oven door handle – Peter held me and I slumped into him and he helped
me to a chair but I did not even have the strength to sit. He helped me to the
floor, got me a blanket and grabbed the phone to call 911. I kept thinking “No – don’t call the
ambulance – I can’t afford this right now!” but then thinking “What is wrong
with me – am I having a heart attack? Am I having a stroke? I think Peter MUST
call for help – he is doing the right thing to call - why can’t I talk to him –
I want to say something but only one word comes out at a time.” It was like my
mind was in overdrive but my body was not fully connected or engaged and had its
own agenda.
By the time the
paramedics arrived I was having spasms in my arms – worse on the left side - but
still was thinking quite lucidly. The paramedic gave me oxygen and took my vitals and assured me that
they were normal. As he asked me questions I was able to respond but the words
came slow and brief. The paramedics brought in a chair stretcher and took me out the
front door and down the tilted, steep and icy front steps of Peter’s front
yard on a hill to the waiting ambulance. Even at the time I saw the humor in
the situation and I felt quite calm as the paramedics struggled to get me down
the steps and then worried about how they would get me into the ambulance
parked uphill. They commented to each other that if they opened both of the ambulance's back doors, the
inside stretcher would fall out and race down the street! So they finally
asked me if they supported me I could climb up into the ambulance – how strange
that they did not park facing DOWN hill – they live and work in hilly Galena every day! I was still weak but they
helped me up inside. My first ambulance ride – pretty bizarre – I watched as we passed
all the traffic lights, normally so familiar to me, but now seen while looking up, to the nearby Midwest Medical Center. Peter and my best friend Tracey Russett were with me at the Emergency Room, such a great comfort to me!
The ER staff took blood, did a chest xray, started an
IV and I recall being unable to keep my annoyance in check at the pain of the needles –
normally I would grin and bear it but I was quite vocal about my pain. I was
given something to calm me down. I was getting freaked out because I did
not know what was happening to me and was getting spasms in my arms and these were spreading
to muscles in other parts of my body. My jaw was clenching until it ached and I felt chilled to the bone. I was given a CT scan and I don’t recall having the test,
but I do recall that I was moved from one stretcher to another. The scan showed a 3 cm meningioma brain tumor in the right fronto-parietal
parasagittalregion, between the frontal and
parietal lobes, along the important large sagittal sinus vein that runs between
the right and left lobe from the front to the back of the brain. These tumors grow from the meninges - the covering of the brain - are most often found in women and are usually benign.
Above are poor photos of creased print-outs of CT or MRI images of my brain, taken December 26 and 27, 2012. The top image was taken before contrast dye was injected. The scans are reversed, so the tumor was actually in my right brain.
The doctor on
call at the medical center informed me that the “golf ball sized tumor” was probably not related at
all to the incident that sent me to the ER – that it could have been there for
decades unnoticed and that I could have it for the rest of my life without
having any trouble. He sent me home that night with literature on panic attacks plus two
sleeping pills in case I had trouble sleeping. I was told to come back the next
day for an MRI. I was able to walk back up the stairs at home that night under my own power, and had two helpings of the rice and curry! I felt fine!
Later my neurosurgeon told me I had actually had classic
partial seizure symptoms that should have been recognized, and any panic
symptoms came from my freaking out because I was having the first significant
seizure of my life. The partial seizure was definitely caused by the meningioma and this is a typical way that the tumor makes itself known. The seizure was really scary and I hope to never have
another – I never heard of “partial seizures” before, so I did not have a clue
what was happening to me. Looking back on it now, it was almost like a shamanic
or out of body experience. The feeling of déjà vu I had before the seizure was what is known as an aura. I want to think about that feeling more and use it in my art. Below is a link to share information about partial seizures, often misdiagnosed and misunderstood.
I returned to the medical center for the MRI the following day and I found I don’t really mind the scan, I kind of enjoy the
“house music” beat. I can often easily put myself into a meditative state and first I meditated but my thoughts flooded back and I found tears running down the sides of my face as I lay in the machine thinking about the past two years. This was just two days past Christmas and I longed for my kids to be near me, I felt so alone but I did not want to tell them about this incident. I still was under the impression I had had a panic attack and did not want anyone to know about it because of the stigma that some people attach to such things.
My nurse-practitioner, Margaret Dittmar, called to discuss the
results with me. She sent me copies of the MRI and CT scans which I found fascinating, although it was quite a
shock to see the size of that growth in my head that had been there for
some time without my ever knowing. Margaret referred me to a neurosurgeon giving me options to go
for treatment in either Iowa City, Chicago, or the University of
Wisconsin hospital at Madison. My first thought was to go to Chicago since I
lived most of my life there and still have extended family in the area, but
since I thought I may be put on watch and wait I might not want to inform my
mom of the condition unless surgery became inevitable. Since Madison is closest
to Galena, I instead asked to see a surgeon at UW. The university chose Dr.
Robert Dempsey as the best fit for my condition and how fortunate for me that I
was placed in the hands of the very best, the head of the neurosurgery
department at the University and a very kind and gentle man of spirit. My first
visit to Dr. Dempsey was on Wednesday January 16, 2013. It turns out I have a
friend whose husband was operated on by Dr. Dempsey several times and had rave reviews for him. Also, our
Chicago area dentist who has been a lifelong family friend also knows Dr.
Dempsey because their wives were roommates in college!
It was decided by the doctor that
resection of the tumor was needed. I asked if I would not be a good candidate
for watch and wait, but Dr. Dempsey said that in his opinion the tumor had already
remained too long and was already affecting my motor skills and vision on the left
side. It was not clear if my depression or any other personality changes could have been caused by the slow growing tumor. The doctor apologized that my handwriting would not improve post surgery - darn! I did shed a few tears once I knew I would have to have a craniotomy on February 8, 2013 - mostly because I did not want to have to tell my mother about it. In the end Mom was as strong as always, and she was also grateful that I had such a great surgeon, and an Irishman too!
The doctor prescribed Keppra to control and prevent seizures for before and after surgery. These were difficult to adjust to at first, making me very fatigued. After a week or so of taking the medicine I felt stronger and also realized that I must have been having minor partial seizures for a while because I no longer had spasms or stabbing pains in my left arm.
A high frequency MRI at University of Wisconsin was scheduled for January
23, 2013, so that the doctor could better map out his plan for surgery. So we returned to Madison the following week. This MRI
was felt more deeply than the first – I could feel the scan go through
particular areas of my head – I felt the waves go through my eyes and I could
tell when the scans exited out the top or one side of my head and past my ear. It was not
painful, but a definite vibrating sensation. I am really curious about the MRI
images and how my head looks inside, and spent more time researching the
workings of the physical brain, what areas affect different parts of the body,
language skills, vision, etc. I watched videos like the TED talk by Neuroanatomist Jill Bolte Taylor about how it feels to have a stroke. I am more aware of the power of the right brain. What an amazing organ, our beautiful brain! I mourned
about the brain injury that had already taken place without my knowledge, I fretted about a possible loss of vision or creativity, but at
the same time I was grateful that the growth was found and was curable, and most likely benign!
Feb 2, 2013 My post on the Meningioma Mommas Facebook Group:“My Meningioma
has been throbbing tonight - he must know he will be history by this time next
week. Bye bye baby! ;-) I don't recall having
this specific sensation before I was diagnosed - but now, knowing its location
- there is no doubt that is where that "beat" is coming from. I just
hope M has not been the source of my creativity spurt of the past few years because
my art is going to suffer if so. I feel there have been some deficits recently
too. I expect healing to be slow and will try to be patient with myself. The
spongy brain will slowly grow back into the space where the tumor once sat, but
there will be residual swelling post op and the damage from compressed blood
vessels will repair more or less over time, although some damage will never
reverse.”
I am working on one more blog post about the surgery and recovery. I will be on disability for two months post-op. There is still time to give to the Alice Recovery Fund and there will also be an art auction fundraiser in Galena, Illinois at Miss Kitty's Grape Escape! Thanks to Joe and Lydia at Pinder Pottery. Thank you to all for the many ways you have shown your love and support! It has helped my state of mind and healing - I am so grateful!
Time to call on the Butterfly Muse!
photo and concept by Bob Lieberman for the Artists of Galena photo project 2013
"Someone I loved once gave me a box full of darkness. It took me years to understand that this too, was a gift." ~ Mary Oliver
"Brain Storm" Holga photo of Alice McMahon by Tracey Russett
Gifts sometimes come in unusual packages. I feel so grateful to have another chance at life and love after surgery to remove a golf ball sized meningioma brain tumor. (Read more about my surgery and recovery at Alice Recovery Fund.)
December 17, 2012, at noon, I was in my Galena apartment art studio having lunch and an owl (Great horned owl? Barred owl?) crashed into my second floor studio window just a few feet from where I was standing in the living room, and then it fell to the ground below. Crows mobbed the bird and were causing a ruckus! I was happy to see that the owl was able to fly enough to perch in a nearby tree but it may have been injured - it hit the window hard and I only saw the flurry of brown and white feathers so wide it filled the entire width of the window, after the loud crash! A year earlier I had drawn an owl into my piece “Persephone” and had only just the day before posted the emblematic image as my banner on my Facebook page. It seemed as if this was a metaphoric sign, the incident seemed so surreal to me and startled me not just because of the loud sound and the drama of the scene but it also felt like a wake-up call, something was trying to get my attention in that instant, but what was it?
Here is a brief background before my Dec 26, 2012 diagnosis with a meningioma brain tumor:
Many of you know me and my career quite well because you are fellow artists, and some of you may only just be getting to know me because I am new to your area. Some of you may have lost touch with me in the past couple of years because I have been struggling to get my life and career back in order and I have not been keeping up with my family connections, my art contacts or my social networking. When I have been networking, I have kept most of my story to myself because it has been messy and complicated and just too painful and personal. Out of necessity and because so many have asked about my current situation, I will share more with you now.
I am a fine artist and mother of three young adults. I have been married to my high school sweetheart for 32 years, but we have now been separated for two years. The past few years have been extremely difficult – having about every possible life stress in the mix. Times are hard, the economy is a disaster and everyone has their stuff right now. My family was not excluded from these trials and this is our story.
The beginning of the end was our move about 3 years ago from our home in the south side Beverly neighborhood of Chicago, to open an art and music café business in the tourist town of Galena, Illinois. The family business we started with much thought, creative energy, hope and enthusiasm began strong and with great reviews, but at a cost of family and financial stress to the point of disaster. In hindsight, could my slow growing brain tumor have caused or added to some of the problems that lead to our breakup? We will never know for certain but it is a fact that I did suffer depression and anxiety beginning with the move away from our family home, along with some other physical symptoms I attributed to aging and stress. Leaving my art career and close knit extended family in Chicago for the drama and extreme intensity of small town America in the height of tourist season would be enough on it's own to drive me to the edge. We were all stressed, we all were acting out during that first year.
Our family of five all worked together to bring this dream to fruition and Rendezvous Coffee & Tea was and still is a great café. I will always be proud of the ways my kids all contributed so much of their own strengths and talents to help build that café and my youngest son is still an excellent barista there and works with his dad. Maybe given time and more counseling, more patience and more financial backing, it could have worked out, but most likely our marriage was bound to break up as people do grow apart over time even with great love and best intentions. Too much family togetherness, my menopause and my husband's bipolar symptoms, disagreements over management and money, Main Street politics and gossip, all these mixed up into an unhealthy brew and I all too soon left the family home and business and although we tried, we were never able to patch things up enough for me to return.
Having no job skills outside of art, café management and mothering, I went through seven odd jobs at minimum wage in two years and moved five times in the same space of time. There is no family savings or retirement fund left, I lost my credit, our Chicago home is owned by the bank, the property we shared on Main Street in Galena was somehow never in my name, and for some reason my name was never on the family business either, although most of the café debt was in my name only. How did that happen? I did not know any of this until we were separated. I do not know to this day what happened but trust was broken on both sides and there was no point in trying to heal those wounds and if I tried I was met with stoney indifference or downright aggression. I lost my health insurance and I was dependent on public services for food and health care. I drive a fifteen year old car with a cracked windshield and finally, just recently, I did have to resign from my Chicago art gallery connection because of financial and logistical reasons. I borrowed money from my family for divorce attorney fees and I have received no maintenance of any kind during the separation. I received free legal and psychological counseling but it was not much help and the divorce is still in limbo after two years.
I even lost touch with my own children in the end which has been the worst thing imaginable for me. It has been hell and I was beginning to wish I could just slip away.
"Shades of Gray" 2012 self portrait installation, mixed media
Don’t get me wrong, there have been moments of deep joy for me during these difficult times – often coming from my realizations about the meaning of true friendship and trust – love and patience and understanding of people’s foibles. My art is deeper and has been informed by the trials. The works have
been few and far between because of stress and my deep need to be in a
good frame of mind to work. There are far fewer hours to spend on art
with 40 to 60 hours of day job work, and in off hours I was hanging out
with friends just to feel something and to make connections in my new location.
The “Ophelia” works were heartfelt because of my depression of leaving the past 50 years of family life in Chicago behind and starting something that was not really a dream of mine, just at a time of hormonal change and the real trauma of the empty nest. In hindsight the depression and anxiety may have been aggravated by the growth in my brain.
“Out of Khaos Came Gaia” is about my relationship with my 3 kids – about the longing for the lost closeness with them in childhood and wistful hope for their future, my new found closeness to Gaia, the land – in the driftless hills of the tri-state region of Galena. Even the bats that visited my apartment during this period are depicted and dissected and examined in my blog about this piece, and reveal the true good karma inherent in the bat's symbolic and actual presence in my life during those months. I recall sobbing so hard my heart hurt while drawing the Gaia piece - and researching at the time that there is a real heart/mind connection and people actually can do damage to their health from a "broken heart." My pain was an actual physical ache in my chest and my mind was numb trying to make sense of the emotional cruelty that was coming at me from all those I loved and cared for most in the world.
My diptych drawing "Abduction of Persephone" is an interpretation of the mythological story that explains the seasons and relates to my relationship with my artist daughter, coming of age. Thankfully some of the family stress is finally beginning to heal and for this I give great thanks to my daughter for doing her best to be open minded and diplomatic.
"Narcissus and Echo" Walnut ink on vintage handmade paper with imperfection - 14 x 10."
I am fortunate to have found a great group of supportive friends in my new community and if it had not been for them I do not think I would have survived these trials at all. After being frustrated and under-appreciated in dead end job after dead end job, in July of 2012 I was fortunate to be hired full time at Thomas Mangelsen Images of Nature Gallery in Galena. That has made all the difference in my switch from survival mode to thriving art consultant and I still have time at the end of my week to get back to my career as a fine artist! I have had benefits only a few months now through this job, which has been phenomenal and just in time to save me from sure financial disaster from medical costs. I will be able to take advantage of disability leave during my recovery, what a life saving turn of events! Out of pocket expenses will still be a great challenge for me since I am already financially strapped, and so my Recovery Fund helps to lift a great load off of my troubled mind right now. Thanks to all who have helped in ways both great and small!
“The longer I live, the more I realize the
impact of attitude on life. Attitude, to me, is more important than
facts. It is more important than the past, the education, the money,
than circumstances, than failure, than successes, than what other people
think or say or do. It is more important than appearance, giftedness or
skill. It will make or break a company... a church... a home. The
remarkable thing is we have a choice
everyday regarding the attitude we will embrace for that day. We cannot
change our past... we cannot change the fact that people will act in a
certain way. We cannot change the inevitable. The only thing we can do
is play on the one string we have, and that is our attitude. I am
convinced that life is 10% what happens to me and 90% of how I react to
it. And so it is with you... we are in charge of our Attitudes.” ~
Charles R. Swindoll
