My Healing Journey

For some time now a blog post has been "brewing." I'm not sure it's fully steeped, but now is as good a time as any.

So many people have asked me to share what has made such a difference in my healing. I think what they really want to say is, "What in the world has brought you back from such a dark and sick state?" I guess asking me to share is a mild understatement. From family, to friends, to doctors and other practitioners, they have been pleading with me to write my story. I'd like to think there is a book somewhere that will (in time) come into fruition.

I'll start off by saying it's hard to put into words and explain. Partially because my memory has been greatly impacted by years of illness, and mostly because the last year is frankly just a blur. But really, I think the main reason it is hard to write about is that the transformation is huge and it involves being present in what is now. I'm not spending much time lamenting and re-hashing other than what is needed to heal old patterns. I do see the value in digging around in the ole' noggin a bit to try and find what tidbits I can, as I know others really are interested in this seemingly miraculous healing.

My first step was nearly dying. Step two was deciding that somehow I needed to figure out how to live. Step three was borrowing faith in myself from others who believed in my ability to heal as I had lost that belief. Step four was submitting myself whole heartedly to the process without white knuckling the steering wheel. Step five is just being joyfully alive.

Last Spring I knew that somehow what I had been doing wasn't working. I didn't know what to do though, and I was terrified. I felt like I was completely lifeless and in a dark tunnel. I wanted someone or something to fix me. I had this incredible community of friends, family and practitioners desperately wanting me to be well and I wanted to, for them. But I hadn't a clue how to make it happen. To start, I borrowed their belief in me. I didn't have faith in myself anymore, but they did and that seemed to count for something. I also borrowed the strength and will to live from two women I had met at a healing retreat a few years prior. They were both coming into health, back from metastatic cancer diagnoses. They were so deeply inspiring. I wanted to have the will to live like they did.

I didn't have the belief in myself or the belief that I could live and be healthy again, but others did. And I saw others doing it. So for a short time this was what I had, and I used it to springboard me into the next chapter.

The next chapter was attending the Shan Ren Dao healing retreat. How to summarize what happened there seems impossible at the moment. Possibly because I am extremely tired. But more likely, it is because it is, and has been very hard for me to explain. What I will say is that I fully opened myself to the healing process and made a pact with myself that I would give it all I had. Or more correctly, I would get out of the way and allow what was to happen to happen. And I worked hard too. Very hard, but I guess that "work" was more just keeping my habitual patterns from steering myself into a ditch.

The time at the retreat cleared out so much clutter from my heart and head. It was an opportunity to release many negative habitual patterns so I could see the light shining that was me, that has always been me. That is really the crux of the lessons I gained there. That no matter how dark the clouds of life may feel, the only reason we can see them is because of the incredibly bright light that shines. And that light is us. The sticky cloud layers, and our resistance and coping mechanisms lay the foundation for illness. By looking at the clues the body gives we can trace it back to certain patterns that no longer serve us. When we change the internal terrain, the illness no longer has the food to continue to live and thrive. I know this sounds terribly woo woo, but really it's quite effective. It allows one to stop blaming others and situations for one's misery and instead be fully accountable and capable. Capable to change patterns and to heal.

After the retreat I was terrified that I would slip back into my negative self-coping patterns and the Autoimmune Encephalitis would flare again. I knew this fear was an old sticky cloud layer, but goodness it felt real. Once again, I borrowed others' faith in me and kept moving forward. I set the clear intention to pace myself, to listen to my body, to replenish and restore. I went about my life, owning my mistakes and making amends. I also was gentle with my expectations and didn't try to do everything "perfect." I just did the best I could.

I began to add in other supports that naturally seemed to be showing themselves to me. There are so many, but I'll touch on what I can remember. Reading inspirational cards, daily meditation book, a gratitude journal, gentle yoga and qigong, chanting, being by the water, trauma releases exercises, art, cooking and eating well, daily walks and bike rides, hiking, mindfulness meditations, applying the principles of quantum physics and the placebo effect, reading inspirational healing books, prayer, listening to my inner knowing, gentleness, forgiveness, and lots of laughing. Added to the mix were Chinese/Japanese medicine, the principles of Ayurveda, returning to the study of Vedanta, massage, essential oils, craniosacral therapy, psychotherapy and high CBD medical marijuana as well as a few remaining medications and herbs. I was doing what I could to change the internal terrain in my body and encourage healing in my brain due to neuroplasticity.

It seemed the more life giving practices I added in, the more resilience and joy for life I had. A phrase in a meditation that I couldn't understand now was easy. "The joy to be alive" was within me and there to access. FINALLY.

Now I don't see myself as sick, as ill. I identity with what is right, with being whole, with being well. I see myself as radiantly healthy and feel in my body what that feels like. I know in truth that healing is still happening, the symptoms are not gone (although they are amazingly manageable). I am not lamenting the past or fretting about the future. I am living in the now as much as possible. Now is full of love, gratitude, joy and light. It is me. The clouds that come, the pain that may be there, whatever it is, it just is. It doesn't contain or define me. I contain it. And if I include it in my awareness, in my breath, and not lock horns in battle with it, then secondary suffering doesn't ensue. The tough stuff bubbles up and somehow whatever is needed to help me move through it, it also bubbles up.

Now my days are spent on the floor watching the wonder of an 18 month old stacking boxes. Riding by the river in awe of the falling leaves, and my ability to somehow pedal my bicycle. I take immense joy in smiling at neighbors, talking to friends and family, feeling the earth beneath my feet or the sand in my toes. Food is incredible - growing it, picking it, cooking it and being able to eat and digest it. The sound of music in my ears is a miracle, which makes going to an indoor concert venue feel like Mt. Everest. Movies are fun as is staying up late. Climbing mountains are even better. Sometimes the "mountain" is a metaphorical one, such as Mt. Joe (aka Trader Joe's). Or the sheer joy of returning to my old workplace (now as a volunteer). I flew home to Maryland and Delaware for the first time in 5 years and had an amazing journey visiting family and blasts from the past both in the form of places and people.

My neurologist says the medical treatments worked to a point, but what has kept me from relapse and is healing my brain is the copious amount of additional practices I have added in. (He pleaded me to share this with others.) I no longer look to anyone else to heal me, as I know my body (which is non-separate from this incredible universe) is fully capable of doing it. I believe in myself again. I know that all is and will be well. I know that I can access what is needed to move through the next step, and the next step.

It's been quite a journey, and continues to be. All that is required is that I show up. I show up with gratitude, with reverence, with patience, with trust, and with tons of compassion.

F.A.I.T.H.

Finally
Allowing
It
To
Happen

What is happening? Healing.

Healing is beautifully raw. Healing is also beautifully messy. Much like the face of a toddler at mealtimes. Messy, but still shining. That is what it feels like often. One day I am breathing and in the moment moving through my day. The next I am trudging through it feeling like I have weighted boots on in a soggy marsh. The common thread being movement. I am engaged in my life and believe in my capacity to heal.

Even the inner fog at it's thickest is still moving. The subtle shift is happening from within. There is support around, and tools that I am extremely grateful for, but the healing is happening because I am committed to it and engaged in the process. There is no one that can fix me, nor can I fix myself. Because to fix something, it would require it to be broken. I am not broken. I don't need to be perfect because I am perfectly imperfect. I am not bad for being how I am, however that is. I just am. I am. I am. I am.

I also don't need to figure it all out or even know why, or what or what's next. I can simply let what is, be how it is. And trust the process. I can lean into it and be curious. And breathe. Breathe a lot. When I see side stepping, back stepping, cross stepping, stepping away, I can gently bring myself back to what is and to my intention. I can hold my hand and guide myself back, like one would a toddler on a walk.

Such simple stuff and so challenging at times. But no matter what I read or what system I look at it's basically the same thing.

Breathe.
Be gentle with oneself.
Forgive and release.
Be with what is.
Come back to this moment.
Love and gratitude.

And remember always, that the light shines brightly even on cloudy days.

"What is your prognosis? Are you cured?" As I heard someone say recently (but can't remember the exact quote or who said it), don't expect a good answer when you ask a stupid question. Heck if I know the answer. All that exists really is this moment. For that sentence I have immense gratitude. Living in the now with loving acceptance (even if I have to bring myself back sixty times a minute) is something to be infinitely grateful for.

New chapter starting...re-entering my life

From a Facebook post (still not able to blog but this is more like a blog so maybe the time is soon that I can come to this forum and just write. Hands shaking when I type or write. In due time. In due time Faith.)

Update:
Feeling very grateful that my mom has been here the past month to help our family through a very challenging time. Sad she is leaving in the morning, and Terry is headed back to work, but also know it is time and we need to all stand on our feet. It will be a challenge for a bit while I continue to heal but I have "faith" it will all be okay. I guess one challenge and hidden benefit of my brain being so scrambled is I don't remember much of the last few months or how bad it got, but I know it is better--- at least that is what they tell me! (just not as better as I want it. Soooo tired of this process). Still not quite sure how it's all gonna unfold -- errands, etc. but again...it will somehow. If you wanna help be sure to stay in touch as sometimes it's a simple few errands that you can fit into what you were already doing but for me..the driving there, doing and coming home is all the energy for the day. I know this will get better with time. Today I saw my neurologist who reminded me that my brain is healing slowly, but it is healing. And look at weekly improvements instead of daily, and allow 6 months for healing...not 6 weeks. And take more pain meds (again to allow the brain to heal). I want a guarantee I am not gonna relapse again. That he can't give, but he is really encouraged by my improvement and seems to think it is brain injury healing and not the encephalitis "actively" per say. I'm having a lot more pain on a daily basis than I would like to accept and taking daily pain meds feels completely out of character for me, but the pain is too bad to do otherwise. Whether the pain is from the brain still healing from the encephalitis flare or a side effect of a immunosuppressant medication I am on, only time will tell. He wants me to give it 3 months of this plan -- rest, joy, same meds...tincture of time. Of course, being vigilant for early signs of relapse, but just giving it time. I am hopeful, a bit scared (but who wouldn't be) and yet I have no choice. I'm realizing how "used to" relapsing and fearful of it I am, that I am always terrified "IT IS HAPPENING" that I miss that it may not be happening, but that my brain is tired or some other explanation. Speaking of tired brains. Off to bed. Thank you all for your love and support!!!!

The reality of what is

(From a Facebook post. Not able to blog still. Will come I know.....)

Feeling the weight of my reality today. Remaining hopeful and yet seeing what is. What is, is a nearly 4 year headache, a near 20 year fall out from a f&&^%&^%ing tick bite, a rare autoimmune disease that can cause havoc, and a brain injury that is well - challenging. What also is, is an amazing community of support and the trust that what is needed will be provided. I have finally come into acceptance that I need more supports in place and that I must learn to work with the brain I have rather than push it to be "the way it used to." I have faith in that it will heal, but I must be here now and function with what is, not what was and not worry about will be. Living in the moment, being content with what is --- the essence of most spiritual teachings. Trick is, when you've had a brain injury, you have no choice. I guess all there is to say is thank you. Thank you for teaching me about self care, pacing, rest, trust and being present (and learning when to ask for help).

A window in - letter from Kirah (my incredible daughter)

A window in from my brave 16 year old daughter... (unedited by her mother)....

Dear friend of a person who has a loved one whom is chronically ill, 

My name is Kirah Knee and I am sixteen years old. I am writing this letter to give some insight into the lives, and homes of someone who is chronically sick. 

My mothers name is Faith, and she has been sick my whole life. I have memories of doctors visits, I remember her laying in bed for hours wracked in pain because of something we thought was Fibromyalgia. I remember being on a boat with her and thinking about how I could see all of my moms ribs. I wondered why her other friends on the boat ribs did not show. When I was a young child my mother was sick, but she was able to live her life like you and me, just with a few more meds and a few more hours in bed. 

When I was twelve years old my mother was diagnosed with Lyme's disease. Lyme is not something that is very documented, and many doctors do not even believe it exists. After a few years of Lyme treatment not quite working our family was forced to think of the option that the lyme that had been wrecking havoc in my moms body for 20 years was gone, but had opened the door for something else. A very skilled doctor proposed the idea of auto immune encephalitis. We have tried countless treatments, hospitalizations, and non western methods of treatment. But her health is only deteriorating. In no way is this a fair account of my mothers trials of health, as we have many, many horror stories. I am only trying to provide back round information. 

My step father and I have been taking care of her since this happened to our family. He is a super star, he holds a full time job, takes care of our family business, he tends to our house and the gardens, he takes care of my mother, and takes care of me when my mothers brain causes her to act irrationally, making her do and say things she does not mean. He does not get the credit he deserves. My grandmother has come out to help us when Faith’s health gets too much for even us to handle, but a flight across the country is not something that can be done frequently. Our wonderful friends also help when there are hospitalizations or sever treatments happening, and we are eternally grateful. 

The stress of this illness on me is almost debilitating. Waiting in class to find out if my mom has a tumor, if she is back in the hospital, it can be too much. No sixth grader should have to be worried if her mother has a brain tumor, and may die. No one should ever have to feel that kind of terror. I am able to manage with the support of my step dad, and my wonderful coaches and fellow dancers on my dance team. 

I would like to address you personally; if you have a friend who has a sick loved one, please reach out to them. Please call them and check in. Please ask how their mother, father, brother, sister, is doing. Ask them how they are doing. Being in a family this sick can feel like you are on an island. People are afraid to ask about how things are going because the answer may not be a good one. Because they don’t know how to handle this sort of thing. I get it. I understand that this is scary and you don’t know how to respond to something like this. But I implore you to take a step back, if this is so scary that you don’t know how to talk about it with your friend imagine what it is like living it. Imagine how you would feel, how you would want your friends to interact with you. It can feel as if people only care when you are in crisis. People ask you how you are when your mother is in the hospital, but not when we are fighting the everyday affects of this illness. 

I hope that this has inspired you to text a friend, call someone who you know has a similar struggle in their life, or just made you a little more grateful for your mom. Illness is not easy, and it will never become easy but you would be surprised how much a genuine question, or simple text saying “Thinking of you, hope you are doing well” will lift a person who has a family member that is ill up. 

Sincerely, 

Kirah Knee 

Faith Island

(From a Facebook post. I have been trying to blog but just haven't been able to lately. Also have  needed to express how I felt to my friends. I felt really sad this morning until I wrote this. Immediately after writing and getting clear with my friends, I felt better. And better still when people reached out.)

Keep trying to write something to express this and I just don't really know how...so here goes. (Please read...thank you in advance).

Faith island feels terribly lonely and hard these days. After 3.5 years of being very sick (and almost 20 years total, but I think I should just lose count), the support is different. If I ask for help specifically stating what I need, it is there and I am very grateful. But what is missing is my friends interacting with me --- almost at all. I know everyone is busy, but man it gets hard and lonely on Faith island. A text, an email, a card, an occasional phone call or visit or walk, etc. means the world to me. Being chronically sick means invites to parties, events and even plans made often get cancelled. And having Encephalitis/an acquired brain injury -- I know I can be unpredictable and not the easiest person to be around sometimes. I'm still me though - the friend you love. I still enjoy laughing and just being with my community. When you reach out...even a quick text, message, etc. - gosh it means the world to me. Extended interacting can be hard on my brain, even though I love seeing people. Short visits one on one or just a few people, in non-noisy environments are best. Even a quick note or email. Anything - some interaction. I can't tell you what medicine it is. I miss hearing about your lives, your kids, what your days are like. I miss my friends...terribly. Trust me, we don't have to talk about my health challenges unless you want to know details. I'm committed to getting well and know that it will happen. The process is still unfolding.
Anyway, I apologize upfront for saying what maybe I "shouldn't say," but there it is.
I remember when I worked with parents of very sick children, they would talk about how there was tons of support when the child was first diagnosed and then maybe if they are in the hospital or if hospice gets called, but otherwise it disappears and they are left on their "island." Doesn't have to be this way. Reach out. If not to me, to anyone in your life that you love. If they have major life challenges, don't be scared about not knowing what to say. Often all they want, all I want, is human interaction.

Okay...I'm done.
I love you all. Thank you for being in my life.

A Window In: Dr E visit...onward with hope

Today was intense.

Left for Dr. Estevez appointment (my neurologist) at 8:00 a.m. I felt so nervous. I trust him, but it's so hard to go to appointments. There is so much noise, lights, talking, questions, thinking and deciding. I brought my husband because it's too hard to go alone anymore. My brain overloads and I don't understand or remember.

Today was no different. Sunglasses on for the crazy bright lights. I move us to sitting in "my chair" in the waiting room. It's the chair with the least amount of noise I discovered some time ago. While in the exam room for 45 minutes before doc showed up, I reviewed my notes and questions. It seemed like the more I reviewed the more confused and nervous I got. Finally I gave up. I was so exhausted that I had to lay on the table in the dark with my eyes closed ---- and the appointment hadn't started yet.

I want to write more about what happened today but I can't. My brain is fried. I'm nauseated, in pain and tired, but not sleepy. Oh dear, this brain is really something. What seems most important from today is how Dr. E stressed that I can get better, it's just about finding the right combination of treatments and maintaining hope. He said this when he came back in the room to find me in tears in my husband's lap drenching his shirt. I wasn't crying from sadness but from exhaustion. When my brain hits overload from talking and thinking I often end up wailing. Terry explained to Dr E what was happening as I think he thought I was sad. Not to say this isn't sad or scary or maddening at times, but if I get angry or short tempered or cry, it's probably unrelated to what's happening and more related to the fact that my brain is overloaded. This is hard for me and everyone around me, but it is just reality. I learn to manage more each day.

Managing. Accepting. Having hope and being realistic. Seems to be all I can do. Onward.....