Seeing the deeper messages

Some days the pain is so bad that all I can do is writhe in the bed, cry and pray for some relief or that I will somehow pass out and wake up in a little less pain. If you asked me at one of those times what this pain and illness has taught me I would either completely ignore you or possibly launch something at your head. That said, when I get a little perspective - either from a reduction in pain or these days, it is more likely that I am doped up on pain medication - I can see that the opportunities for seeing the lessons in illness are infinite. My spiritual teacher recently offered the idea that maybe my husbands GI bleed and needing a blood transfusion were an opportunity to let go and to try looking at the world with fresh eyes. What if this is true? What if, living in immense pain is an opportunity to see that I am so much more, so much greater than this pain? What if, this is the way that I will learn to not identify so much with the body-mind-sense complex, and see that I am really this limitless, beautiful being that is unaffected by pain? Intellectually I can see this so clearly. When I am writhing in pain, feeling as if I am passing a kidney stone in my head, it is a bit more difficult. But, I can see the importance in looking deeper into what the message may indeed be. I know that "medicine" many years ago, especially in indigenous tribes, was more about finding the lessons and going with that flow, than finding the perfect treatment. The flow doesn't always feel good or go remotely as we would like it to, but I believe the flow is that perfection, call it God or Ishvara or the Universe or whatever you may, but it is something that is all pervasive and beautiful. I am given the opportunity every day to remember that I am not just this body, but something much greater. Now, that is something to be grateful for. 

Thanksgiving - time to sift through the challenges and find the gratitude

Today is Thanksgiving. Throughout the country, families are waking up and beginning to prepare an elaborate feast, gather with friends and family and take stock in all they have to be thankful for. It has always been a favorite holiday of mine, steeped in family tradition. Last night I called my mother and reminisced about Thanksgiving spent growing up on the island and on the farm. I even pulled out my list of what I am thankful for that I wrote in 1982, complete with phonetic spelling. We were very poor and living in a simple shack, which the list really reflected. "I am thankfull for electrisade. I am thankfull for a full freezer. I am thankfull for the wood pile." That list always helps me, especially when life is throwing me some intense curve balls, which happens to be the state of affairs currently. When chronically/severely ill, in unrelenting pain for what feels like an eternity and in/out of crisis often, it is easy to get caught in what appears to be lacking. Somehow reading that list always magically humbles me and brings me to my knees. No matter how big the challenges, there is always something to be thankful for. When the heart opens in gratitude, magic happens. The resistance and negativity starts to melt and transform. Last night this happened beautifully. I have been in a spell of terrible pain and family crisis with my husband being ill and needing a blood transfusion. Yesterday afternoon I felt very sad to not have the energy to participate in preparing for Thanksgiving and being bummed by the changes this year. No trip to the coast for a family retreat for the first time in years. My daughter is going away for the weekend with her girlfriend's family. My husband is exhausted and not really interested in socializing or the whole Thanksgiving ritual this year. And me, I laid on the couch in pain, wondering when all of this would change for the better. I didn't feel very thankful at all. But then, somehow the universe intervened. My teenage daughter was cheerful (something to be very thankful for) and seemed to change the mood upon her return from dance class. I got inspired to order a Thanksgiving feast take out from our favorite vegan restaurant so we could all share a meal together before my daughter left in the morning. My husband started talking about what he always had for Thanksgiving meals growing up and that lead to me calling my mom and reminiscing. Then the list got unearthed from a large pile of keepsakes and the magic happened. I could not but see the multitude of gifts in my life that I have to be thankful for. The pain and feelings of being overwhelmed seemed to immediately take a back seat to all the gratitude that fills my heart. Yes, I may be sick with this awful disease that nobody seems to have an answer for...okay, that is true. But, I am blessed to be consistently given (although not always predictably) the means to afford some kind of treatment and the access to it. I have the most supportive and loving friends, family and co-workers. I never lack for housing or clothes or food or medicine or clean water. I have a thriving business, a patient and loving spiritual community and a workplace that consistently proves to me that human beings are amazingly strong and compassionate creatures. So, this Thanksgiving may be different than years past, and there may be lots of challenges that are uncomfortable, but there is no denying that I am filled with gratitude for the endless blessings in my life. Happy Thanksgiving!

I don't wanna

I think it is appropriate to post a bit of a disclaimer. This post isn't going to be sugar coated with humor or some positive message that I am trying to talk myself into. I just can't muster it at the moment. Sure, there is positive in my life, lots of it. For that I am grateful. But really, sometimes I think one just needs to let it out and now is the time for me.

I am so freaking tired of this journey. I am tired of Lyme Disease and whatever co-infections, autoimmune diseases, mold and chemical sensitivities, etc. that go along with it. I am tired of PTSD and it's not-so-pretty manifestations. I don't want to wake up with the symptom of the day, cry in the car before and after home visits at work because I am so tired. I don't want to fake it and make it. I don't want to have infections I can't get rid of or pain that is so familiar that I talk to it when it returns after a brief exodus. I don't want to worry about nutrition and what I should or shouldn't be eating. I don't want to startle so badly that it takes hours to recover and realize that I am safe. I don't want to keep searching for answers or accept the very uncomfortable and unpredictable present. I don't want to miss my 20 year high school reunion. I don't want to nearly pass out from a short walk or bike ride. I don't want to feel this lost and floundering.

I just want off this sorry-go-round.

Okay, deep breath. Time to slow down the pity party.

No matter how much I want off this ride that is my life, I don't get to hop off. Just like everyone has their intense challenges and they have to keep going. I have to keep going. Gosh I want it to be different. I want to feel good and lay on a beach and swim in the ocean and laugh with old friends. Oh, I want to do that. But just like my mama always said, "You don't always get what you want. You are old enough for your wants not to hurt ya." Well darn it.

A glimpse of today

I don't have anything witty or profound to say today. No big revelations or point to this post. Today I am happy and sad at the same time. Really guys, I am tired of being sick. I am tired of trying to live life, stay positive, enjoy and accept what is while being so sick. I am really tired of it.

Today went like this.

Woke up relieved and sad that I had found homes for two of my beloved kitties. Found homes for them because I just can't take care of everything I used to -- have to simplify life a bit. Had very little energy and was late doing my morning prayer ritual. Tried to juggle finishing my morning puja and tending to cat kennel customers (my business) at the same time. Then it was time to "check off the list" before going on a play-hooky-from-work-day-time-date with my husband.

Take meds, check. Scoop dog poop, check. Pick zucchini that I should have picked days ago, check. Find warm clothes, check. Eat something, check. Call customers, check. Want to cry and go back to bed because I am too tired to go on.....ignore. Instead, laugh with my husband, smile, get the car an oil change that is 7,000 miles late and finally head to the coast. Sleep the whole way because it was either that or pass out or cry. Nightmare dream about my daughter and her dramas with school bullies that keep tormenting her in the community. Wake up at the coast. Eat lunch. Walk on the beautiful beach and take a nap in the sun with my sweet, sweet husband. Barely make it up the steps to get to the car because the hips don't want to work. Use the bathroom a million times because the bladder is retaining urine and not emptying. Crawl back into the car and fall back asleep because everything hurts so badly. Wake up as we arrive at home.

No more energy. Check email and Facebook. Text some friends. Try to find a home for sweet, old shit eating neurotic dog. Lay in the bed with a crushing headache watching a lovely movie with my sweet husband. Attempt to get up to cook something and end up in bed before even starting. Sweet husband is steaming the zucchini. Bless him. Try to ignore the fact that I feel so stinking ill and that I am so bloody tired of feeling this way.....

The order

Why do really terrible things happen to really wonderful people? I have been chewing on this thought today in so many contexts. My dear "cyber Lymies" that are going through their own physical pain and tremendous loss at the same time. A dear friend's kids who lost their father way too young. Too many women and men that are assaulted and abused. Children born with tremendous challenges and medical conditions. Wonderful, strong people fighting cancer. Innocent victims shot while watching a movie. And the list goes on..... Including the Lymie tribe that I have gotten to know scattered throughout the world.

How do you make sense of what is happening in our bodies, in our family, in our community and in the world? For me, the words flowed today, when responding to yet another unthinkable story in cyber-land-- the sudden death of youth, and it took me back to a moment in my life that was so profound and truly changed how I looked at the world and the order, the cosmic flow of life.

"There are no words to explain the grief of losing a child and certainly no explanations. "Everything happens for a reason" also doesn't help in such tragic loss. I feel compelled to share this in hopes that it may help just a little. When I was in nursing school I worked at a nursing home on a wing with young children that were all on ventilators, with trachs and needed 24 hour care. That same summer I contracted Lyme disease (1995) and then spent the following Spring doing my internship on a Children's Bone Marrow Transplant/Oncology unit. I saw parents losing their children on a regular basis. It was then when a strong understanding came to me, not based on any religion, but really the only way I could go on doing my job without losing my mind. How could I explain that some 90 year old abusive s.o.b lives to be so old and a young child dies at six having lived such a short painful life? Something came to me one night as I stood in the room of a 9 year old after he had left his body. I could feel the spirit had left and there was just flesh and bones remaining. That night I was comforted by the feeling that there must be some plan, some amount of time or karma or life experience that is to occur in this life and when it is done, then it is time to go. And often in that going there is other karma, life experience that happens to the people around that is needed as well. For me this was the only thought pattern that helped. It soothed the need to find a logical reason, because watching young people become disabled or die just doesn't make sense. After that night I was somehow able to approach my life and my work and my own loss in a different way. I still have the emotions, the feelings, the grief when the situation dictates it (like in tragic loss of a youth), but I take comfort in knowing that there must me some plan that I am just unaware of. I have gone on to work with medically fragile pre-school children that are profoundly ill and die young. Their parents have to cherish every painful moment with their children as they know there may not be many. Again, if I try to find a "reason" for it I will drive myself crazy as will the parents. For me, it is just happens the way it happens. There must be a greater order driving how things are.  For me, that brings a little comfort in absolutely heart breaking times."

Life as it is

Life can be really hard. I can make a list of all the symptoms that I have and another list of all the challenges that I face or have recently faced. And yet another list of all the challenges my family faces. I can justify us all to be extremely angry and depressed. It would be completely just, but what good would that do?

What good does it do to prove that I am right? The doctors that didn't diagnose me for 16 years were wrong. The people that have hurt my family are wrong. My family members could make better choices to take care of themselves and make their lives smoother.  I am in so much pain and have to force myself to work and pay the bills rather than get government assistance that I likely won't qualify for while we pay way too much money for insurance that doesn't cover much. What good does it do to lament and string a mala of discontent? None.

We all hear the one liners throughout our lives about looking on the bright side, cup half-full, think positive...blah blah blah. But, really, when the shit hits the fan in your life it is the only thing to do. It really doesn't help to justify your misery about all the woes in your life. Trust me...I have tried.

What helps? Well, I think just accepting what is and doing what is to be done to help when there is something that will help. And let go. And forgive. And smile. And laugh. And enjoy as best you can, through the pain and the challenges again and again. It is how it is. I don't know why this is the way it is, but I can't change it. Resistance is futile. I can accept and live fully or resist and be miserable. I think I will choose the former cause' the fruits are a little easier to swallow.

Walls

"Hit the wall, " a violent metaphor that I try not to use. It's common usuage though makes it a perfect example.  I have been watching the Olympic trials lately and have heard the phrase referred to again and again. When the athlete "hits the wall" they must dig deep into their reserves to keep moving forward or succomb to physical collapse. I can really relate to this.

Maybe instead of the oh-so-violent "hitting" I will say "met the wall" instead. Meeting the wall is a common occurence for anyone who is chronically ill. For me, that wall has been too close recently in that I feel as if it is there all the time. I can count the cracks and crevices on the wall and would prefer it to go away. I could push against it, whine and complain. I know it won't change a thing though, cause' it's a wall. It is what is.

The body is part of the greater order of things. Why is it in so much pain and so weak? That is the million dollar question to which there is no answer. When we follow the answer back to the source -- it just is. I can fight it or accept it. Two choices. That doesn't mean give up. Do what needs to be done to help. But, if the wall is there I can meet it and greet it or hit it and fall down. I can dig deep into those inner resources like the athletes do in hopes that I can push forward. This doesn't always work though because in chronic illness the body is so depleted. Sometimes the answer that comes when I dig is, "The account is empty. You are now borrowing on credit."

I think I am learning to manage the walls. Greet them, meet them, accept them more. This doesn't mean I am not tired of them. I am so freaking tired of managing them - the utter exhaustion and fatigue from a myriad of symptoms. But, I can see that "hitting them" or falling to the floor in tears at the sight of yet another wall is just not an option.

Meet and greet with as much of a smile as I can muster....all I can do right now.