Little Updates

I thought I'd just post a few updates on my brain recovery situation...

Visited the new neurologist on Monday. I actually spent an hour or so on Friday writing an extensive letter explaining my concerns and emailed it to him because I get to those appointments and follow the doctor's lead and then leave feeling that I haven't quite gotten the information I need. So, of course, he didn't have time to read it until I got there, but at least everything was written down. I'll take the same letter to my neurosurgeon appointment next Monday. I would recommend that when you're dealing with brain fog and things that go with that anyway, that any professional visit you make needs to be accompanied by a list of queries, otherwise, you may leave feeling even more fogged up.

What was accomplished, if not perfect by any means, is a plan for long-term health. Determining that yet another anti-seizure medication was making me sick, we scaled back to the Dilantin and the gazillion anti-histamines. The point being to make sure I don't have any seizures. Suggesting that perhaps the fog is coming from side effects of the Dilantin in generic form, we are switching to the more expensive pure pharmaceutical Dilantin. After two days, I already feel less stressed out and so I think this is a good step. However, Dilantin is not a great drug for women in particular. It is messing with my estrogen levels and it is, long-term, a threat to my skeletal structure right down to my teeth. So, it is still an in-between solution for now.

We identified three potential medications that I may switch to in time, as my brain settles down. I can't remember their names at the moment. What I can say is that they're all likely more expensive than Dilantin, and one of them has a tiny research track record so far. I'm okay with taking my time to get to that switch as long as the Dilantin is not making me sick all along the way.

I went for my quarterly MRI yesterday and had a ridiculous panic attack in the pod. I've never had that happen before and it really didn't go full-blown because I refused to let my mind toy with me. I did this by doing some really patient breathing exercises while the "music" of the MRI rattled through me in dissonance. I breathed in four counts, held four counts, breathed out four counts and rested for counts (or finished breathing out), and repeated, imagining that I was drawing a square over and over again. That quieted my brain enough that I came close to falling asleep. It is funny that they bother to put earplugs in, really. I'm nearly deaf now in my left ear, and it is so loud anyway.

Jurica Jelic Microtonal Music Video

I really enjoy this composer's music, and I love this video that, to me, captures the odd rhythms in the passage of trees in a forest to begin with -- like a barcode. It may seem for a moment like it makes no sense, but if I can relax and listen and accept that the rhythm of earth is not necessarily the same, as say ocean waves, but is there nevertheless. If I walk this way and pass the trees in a forest, it is different than if I walk from another direction. And, this is what being in an MRI is like in a lot of ways. If I lay there fighting for a regular beat then I may have a panic attack, but if I can marry my square breathing to the irregularity of sound dissonance then I can be still and enjoy being in a pod or on a walk.

The nearly last thing to mention is that I'm really feeling better without the wheat, and other gluten foods, in my diet. I am aware this is a partial progress, and that as far as my diet goes I have a way to go before I get to the low-glycemic number of perfection. I'd rather take it slowly and be realistic than to do it perfectly for two weeks and then blow it. This take it slowly and make it permanent seems to be a new theme in my life in all directions. Fast solutions don't seem to hit the mark, even if they come close.

Finally, next Monday I'll see the neurosurgeon. This is my last quarterly visit, I believe. After this I may go to see him only  once every six months, and then once yearly. That would be nice. I'll let you know if anything interesting comes up.

A Year Since, Part III

No matter how wonderful painting and drawing is, I am grieving a part of me that seemed so committed, while admitting that those "tired ofs" are there, and the "oulda sisters" exist behind that door. I visit the idea of doors closing and windows opening, and hold onto it. I am back to working on doors that seemed closed, but were left open a crack, for instance, my lifetime quest to make my own Tarot Deck with all of my new realizations, complete with 79 poems that have yet to be fully edited and loaded. Then there are people are asking me if I'd consider doing a special portrait for them! Of course, I would! I'm learning how to set that idea to a reality score of inner music. Composing a real plan for it. I am also in a place of learning how to look at the windows around me.

Rainy Afternoon, Oil Pastels on Archival Paper, 11" x 17"

Physically other doors that have closed and don’t seem to be cracking open are hearing in my left ear, feelings on the left side of my face, and taste on the left side of my tongue. This is due to nerves taking their time to rebuild connections, or not. Also, I had a grand mal seizure in December that has me off the road (you should be happy about this!) and that has in turn limited my ability to be a useful chauffeur mom, and to getting to anything but the grocery store when someone can take me. I really relate to Arab women and those under house arrest now. To be constantly accompanied is both wonderful and uncomfortably demeaning. Don't feel sorry for me. It is just a thing.

It also means that I have to make peace with being on anti-seizure medications for the rest of my life, according to all the neurologists I've visited, and this is a huge drag. Better than having seizures. Yes. That. But, I’m still fighting acceptance of this for the long haul. I give in for the time being. This means I really have to look at ways to make that work -- which turns out for me to be changing my lifestyle choices - diet, exercise, self-care, how to be a productive mom and person and ways to make a living from my home (back to writing??). Oy! Never ending things that fate has given me. Everyone has them.

To focus on what CAN BE DONE is the thing.  If you haven't seen "Silverlining Playbook," yet, this is where I am highly recommending it.

I can be a great mom somehow right? Even if I cannot be there to scoop up, to deliver... I’m looking for that purpose, and meantime realizing that my kids’ lives are not about me anymore in any way, shape or form. I realized this by remembering my love of the Bay City Rollers back in the day, and realizing that they've already grown past that time and I know I didn't give a shit what my parents were doing even then. They’re out there discovering themselves and experiencing things they’ll never share with me. This is what every mother goes through. The empty nest. I’m just getting an advanced, slowed-down, warning. You know, mother birds do not stay in empty nests. They return to an adventure of flying.

I begin flying by learning about being an artist from something other than my childhood. There are a FEW (Har, many) how-to books, classes and crafts (like how to frame and mat an oil pastel piece) to take in. I can take some of the business skills I developed as a freelance writer and editor and apply them to an art career. Heck, ten years or more in Consumer Products branding, copy and content ought to be valuable to an artist. It is not really like I’m giving up on my experience so far, I'm just changing its focus from writing about the visual to making the visual. Who knows? It may bring me full circle.

I can make my body stronger and less dependent on medication to prevent the brain from having a lightning storm, if I keep after what I know. I know I have to reduce swelling, and I know going to a low-glycemic practice, and to keep walking is part of that. Perhaps I will find more. It will be a step-by-step thing. It took me 32 tries to quit smoking cigarettes for good many years ago. I must be approaching that with quitting gluten. Let the 33rd try be the one that lasts.

C,G, Jung Laughs, Oil Pastels on Black Archival Paper, 19" x 25" 

I can face the failure/success question little-by-little, first by linking my work of art to a higher goal of preparation and exposure by entering into an art contest. (I tell all my screenwriting students to consider it a real step along the way, to submit their screenplays to well-respected contests). Maybe if you vote, I'll win something that could help me along the way, a "full studio" Super Shawn Taboret, a nifty piece of furniture that would make it possible for me to do professional level artwork at home.

I could learn that asking for help is not a bad thing. I could use your help. I would really appreciate your help. All I'm asking you to do is to click on the painting to the left. When you land at Daniel Smith's Art Contest, click to "Monthly Voting Gallery," and then go to page two. You'll find this painting about half-way down the page. I am putting myself out there to see what the next step might be and to challenge myself to get beyond a shyness I have about having my work seen beyond a hundred FB friends. I don't know what will happen, but right now I appreciate what I'm learning about what I can do everyday to sell myself tall rather than short. You, by the way, can vote once every 24 hours for the rest of February 2013, if you so choose. Please choose.

So to sum it all up, my year of recovery: My gratitude runs deep. I accept the bits I cannot change...mostly. I can turn away from closed doors and let go of clothes that don't fit. I can ask for help...and even accept it. I can be content by embracing curiosity and dislodging expectations. I don't know what tomorrow brings...

2013 © Amanda Morris Johnson

Finding the Therapeutic...

My, oh, my, I have been off of the anti-seizure medication since Tuesday when my neurologist took one look at me and said, “You have to stop taking the medication, if it gives you a rash like this.” Doh.  Yesterday, thanks to prayers and meditations from all over the world, I took a badly-needed four-hour nap. I feel as if the buzz of the medication is finally wearing off. My neck is no longer swollen like a jungle frog in mating season. I am no longer covered with angry, prickly rash and the heat that made my skin sunburnt pig pink, has dissipated.  In short, I’m feeling near normal.

However, the gray laundry in my head headache floats there over my right eyeball, and the urgency to begin a new trial of anti-seizure medication looms.  As it does this, I notice my resistance to the process, the inner doubt that it will work and the hesitation to open my body to another round.  I notice that I promise myself one more day of normal, as myself, in hopes that a day of balance will fortify my system so that the anti-seizure medication will be what they call “therapeutic.”  I try to imagine what that means.

A “tonic to my system” would be how I imagine “therapeutic” medicine works. I wonder why medications that were supposed to do this for me actually did just the opposite.  Is there anything to be done about that? There must be a way and a one that works the right way in order that I get the egg out of my skull. I didn’t even know that I was uptight about the brain tumor and surgery, to be honest. In fact, I felt relieved to have found a clear answer to some of my fatigue, memory problems and headaches. Perhaps, if I had had a normal reaction of panic and distress, the medication would not have triggered so much despair?  I hope that isn’t it. I still feel confident that having the surgery is going to help.

I have returned to an old regimen of considering how food may affect my body’s ability to process new experiences. I modify my intake of anything that has become a habit in the past few years – wheat, caffeine, acidic foods. The aim is to reduce “heat” in my system.  Though, except for this medicinal rage, I have not had an occurrence of hives for several years, the fact is that the rashes bear resemblance to that old foe enough so that I feel a return to mindful eating is called for and then what else can I do?

With the possibility of seizure now is not the time to start a true exercise regimen, however, it seems like a calming routine of Hatha Yoga might be well worth it, san inversions. This is not a time to try to stand on my head. I notice how stiff I’ve become from simply walking hours a day. Stretching and moving in a slow and deliberate way gives me pause. I see that my rebellion against taking care of myself physically was a bit of childishness that I can no longer afford. I make love to my body by simply feeling each muscle challenged to release this rebellion and accept responsibility for the healthy exchange of oxygen and carbon dioxide. Work with me body and I’ll work with you.

Why should I be so against this body? I purport to love my body, and have meditated on the image of dying and loss of it with a resolve to love all that it offers me, my soul, to experience a physical reality not otherwise available. Still, I want to behave like a child and let the body take care of me. When it does not take care of me then I rebel. I want to eat what delights a few taste buds rather than nurture it with foods I imagine with distaste. I want ease, and all this conscious movement feels like work. I feel my anger that my body cannot simply thrive without attention. It is only now that I recognize that my relationship with my body is somehow the root of a deep problem and that somehow, urgently, I must resolve the conflict once and for all. How indeed to make peace in a concrete, material world way? How can I give up my hours of thinking, thinking, and thinking some more in favor of moving, food preparation, and tidiness?  I never thought of myself as someone who lives solely in her head, but it appears that I may actually reside in that egg in my head and my body apparently an abandoned hulk.

Inhabiting my body then becomes a new conscious goal. This will seem very odd to anyone who has successfully lived in their body through their lives. But, for me it is a frightening prospect. I am nervous to make the move out of the egg in my head because my body is so unpredictable to me because I have not always reaped the expected results from “good behavior”. I do not have the sense that if I do the healthy thing that the healthy experience will follow. I have more of a hit and miss sense of my body. I will have to employ the tactic of curiosity once more to my life. That is, if I try such and so, then how will I feel?  I have to be willing, even in this time of urgency, to be my own guinea pig and trust that somehow I will suss out the right action towards a feeling that I am in a therapeutic state.

It seems clear that living in the egg in my head has been somehow rewarding in ways that I’m not consciously aware of, and so saying farewell seems to mean that I must trust that, in fact, I do not need the brain tumor in order to be myself. Giving up our crutches is always a challenge, but more so when we are no longer aware that we’re using them. I’ve joked for the last six weeks about this and that being the fault of the tumor, but now I do wonder if the benefit of the tumor needs to be recognized in order to be released.  What if, for instance, the egg represents all of the traumas of my past, traumas that have served as excuses for me not to become fully myself? If it is now time to remove their effect, symbolically and literally, am I ready to then become fully myself? Is that the resistance and the rebellion in a…eggshell?