Showing posts with label Home. Show all posts
Showing posts with label Home. Show all posts

Friday, October 26, 2012


"Home is where you hang your hat."

I love being home, no doubt about it. I always have. Even when I was a teenager, I would have much rather hunkered down with my family in front of a good “made for TV” movie than to be out with a group of friends. To me, home feels good. It feels safe. It feels comfortable when the world seems edgy and rough. It feels consistent when everything else rushes to change.

In this world of striving – striving to be richer, striving to be smarter, striving to be thinner, striving to be happier, striving to be healthier, striving to BE anyone other than who we are in this very moment - in all of our conditioned discontentment, we fail to see that we are exactly where and who we need to be– in this moment. Yet, how can it be anything different? But if we are in a constant state of striving, how will we ever know? How will we ever become aware of the beautiful fact that we are already there?

In mindfulness meditation you intentionally commit to being fully present in this moment, not trying to improve yourself or get anywhere else, but to simply realize you are already where you need to be. You aren't trying to attain anything - not even mindfulness itself. You just accept things as they are. In Wiktionary, the Wiki-based open content dictionary, they give this definition of the Old English proverb, “Home is where you hang your hat".
Rather than feeling nostalgic or sentimental, one should simply accept any place where one happens to reside as one's home.
If we truly come to a place of acceptance about ourselves, if we stop striving and realize that in this moment we are ALL that we need to be, then home becomes a place within ourselves. Home is wherever we are, and coming home means a returning to our true selves, a place we are destined for. As the poet Cavafy describes in his journey home to the island of Ithaca, finding “home” was not some external place to arrive at, but a place of awakening and enlightenment within.
Keep Ithaca always in your mind.
Arriving there is what you’re destined for.
But don’t hurry the journey at all.
Better if it lasts for years,
so that you’re old by the time you reach the island,
wealthy with all you've gained on the way,
not expecting Ithaca to make you rich.
Ithaca gave you the marvelous journey.
Without her you would have not set out.
I am very thankful for the physical place I call home. But I have also been in a mental state where no matter where I am at; I can’t seem to find my way there. In my days of striving to find a diagnosis, I was further from home than I have ever been. Fear is like the kindling of the past fueling the fire of the future we dread. It keeps us moving outward, farther and farther from home.

Letting go and accepting where and who we are is not some sort of passive resignation. It is your intentional invitation to the unlimited capabilities that reside within. When asked why people are afraid of this acceptance, Jon Kabat-Zinn writes,
Maybe the fear is that we are less than we think we are, when the actuality of it is that we are much, much more.
The hat in the above photo still hangs in my home. I bought it during a time of great transition in my life, long before I became sick. I've put it on and taken it off many times over the past seven or eight years, each time hanging it back up on the corner of my mirror or on a hook in the entryway. It's presence comforts me. Seeing it there tells me I’m home. 

Right where I’m supposed to be.

Tuesday, November 15, 2011

Perfectly Sick

Do not wish to be anything but what you are, and try to be that perfectly.

-St. Francis de Sales

How are you perfectly sick? Honestly, I ask myself that question on days like today, weeks like this week, months like this month. I believe St. Francis with all of my heart, but it's not quite the perspective I like. I don't believe that if you read further on in his prayer you would come to something like..."unless what you are is not pleasing, then pray with all your might for something else." Not really sure that was what he was going for. 
The truth is, these are difficult days. Tapering off the prednisone has been challenging. I feel as though I am to a point now where I have to continually and very carefully weigh out the benefits and risks to both getting off this medication as well as staying on. There is a point at which suffering is indication of something worse going on, not just adapting to a higher level of tolerance.Which, for a past marathon runner, can be a dangerous level to judge by. I have appointments next week that hopefully will help me with these decisions. 

For's a rough road. It's interesting to me, I posted the picture on the right to Facebook this past week and got all sorts of really wonderful comments. (thank you!!) I was extremely fortunate to be able to attend my oldest daughter's first baby shower (where the picture was taken). The very first grandchild! I wanted nothing more than to just be there with her, and as the day would have it, I managed through the entire event. It was the only time I left our home all week. Getting outside is becoming progressively more difficult. And let me tell you, I was beyond exhausted and on the verge of "giving up" all day. I see that in my face, but I'm not so sure anyone else does. That's what I hope for at least. 
You can't tell, yet, that I am losing my hair. I spent my entire life wishing for less hair, especially when I was a teenager. The few times I dared to get a perm, it ended up costing me hundreds of dollars, literally! That's how it goes when they have to open five boxes to get the job done. Two hair dressers still could not cut down on the time...or the tip! Today I am thankful for that overabundance. It's giving me a few more days. I've resorted to washing it only every other day, and have to do so in a laundry tub with a garbage can next to me. I pull handfuls out at a time. I'm no longer able to wear it down as it ends up everywhere. This loss is especially tough. I guess they all are.

Since becoming sick, my world has become pretty narrow. I'm okay with that. I actually have adapted to it well and have found a certain comfort in it. It's a balance I've gotten fairly good at. Some of the ways in which I find that balance are in my ability to read, meditate and write. Things I really struggled to find time to do when I was healthy are now the cherished moments that make up my days. When I get sick like I am right now, cognitive difficulties have a significant impact on my ability to do all three of these things. Combine that with extreme fatigue, pain, nausea, diarrhea and headaches and quite often these things are not possible at all. Even writing this post today I find it difficult to spell, put sentences together and comprehend things I have already written. 

So where does that leave me? How, dear Francis, am I to be perfectly sick? First of all, just admitting it to you, the reader,  is a start. Sitting in front of this computer screen for hours on end, trying to make the best of things, trying to come up with some really great message, trying to be something other than what I currently am, is not going to do either of us any good. Step one, be honest. 

Step two, be kind. I'm making a promise to you to be kind to myself. Which means letting go of some of my unrealistic expectations. The ones that might have been possible two months ago, but now are just making me more sick. Part of that will mean letting go of the idea I have in my head of meeting Theresa's blog post quota for the week. Another part will mean giving more responsibility to my family and friends. I've decided that instead of comparing myself to the past me or attempting to meet some expectation of the future me, I will give today what  is today's. If that means rest, then it's time to rest. Period. 

And lastly, just be. I told a friend the other day that I actually do better (I was speaking in regards to my emotional and spiritual health) the more sick I am. That's actually one of the gifts of having lupus for me. Illness has a way of reminding us that we are not the ones in control and in doing so, has a way of honing life down to the most important. When I am on the upward swing - well, that's when the old me kicks in and I start taking things for granted, moving too fast, missing out on the present. So for now, it's time to just be. And if that is sick, then may I do it perfectly. 

Some good news! The Maple Floor Project is complete!! I have my living room back and the bedroom, closet and hallway are all put back in order. What a labor of love, thank you dear husband of mine! We are already breathing easier and sleeping better. Here are a few pictures of the finished product...

(After Thanksgiving this Pergo laminate ("fake wood") will be moved down to Emma's bedroom and Dave will be putting maple in the living room as well!!)

I am thank-FULL!!

Wednesday, November 2, 2011

Things I Find In Space

This is where I am sitting as I type these words. 

I just put my wool socks on, along with my green fleece jacket - right over the top of my pajamas, which I plan on wearing all day. It's gray and cold and still around here. The lamps in my room cast a yellow hue that warms me. A kind of "at home" warmth. The kind I used to feel when sitting in front of the fireplace in my parents' home or next to my grandfather under the lamp in their living room. Morning coffee fills the air.

If I stand up and peek out my window, this is what I see. There is heaviness in the sky. A settling. The last bits of fall refusing to depart. Still bright with color, they dare winter come. I am always amazed at the ones that survive, only letting go for buds and blossom. Proclaiming to Spring their acceptance of all things. A final letting go.

Jake snores at my feet. It's a funny noise. A sort of nasal sound with a sweet little squeak at the end. He never leaves my side, no matter what. His position unusual in this picture as he most always lies across my feet. This shot was prior to putting on the wool socks...I'm thinking my toes were just a little too cold for his liking. Snort..squeak.........Snort..squeak........Snort..squeak... The rhythm of contentment.

Behind me, Maggie has taken the high ground. Early on I acquiesced to the whole "being on the bed thing". There are too many days when bed is as far as I get and Maggie's presence brings quiet consolation on even the worst of days. Our "real" bedspread lies under the two quilts you see in this picture. Dog hair, without a doubt, is the bane of my existence. Right now I scarcely can hear her, she sleeps so soundly.

Past Maggie, through the door of our bedroom, lays Jenni the cat. Her bed its in the hallway under the light switch. From the moment we brought Jenni into this house, she has chosen to lie in this spot. We eventually placed her bed here. I believe it is because from this vantage point she can literally see into every room on the main level of our home. As you can see if you click on the picture to enlarge it, she keeps one eye open...just in case. This morning is no different. We watch each other.

Even in my moving about, even in the clicking of camera and key stroke, these peaceful creatures remain still.

The furnace kicks on and off, warming me and reminding me of the filter that needs to be changed. The smell of last year's dust always brings me back to childhood. Do you remember? Smelling the furnace for the first time in the fall. It lies somewhere in my brain between the smell of new tennis shoes, crayons and old school buses.

The computer processor hums in the background - ramping up and down with purposes unknown.

Another confused chickadee mistakes my window for the sky. I look out, and down, to see if a warm hand is needed...

not this time.

Most people's lives are cluttered up with things. Things to do, things to think about, things of "stuff". Minds filled with clutter, lives out of balance. Words easily spoken from experience.

Releasing ourselves from this clutter - if only momentarily - opens in us a holy space. A tender letting go of thoughts and emotions. Allowing us to settle into the depth of Awareness. Unattached to the clutter in my mind and in my day, I roam about in this limitless space, where dogs snore and computers hum. Free from ego, free from dependency on things of this world - transcending "what ifs" and "should haves".

When I am no longer identified with these things, who I Am is no longer imprisoned, and I am free. Freedom arising from a place of space. And from this space emerges a peace that is not of this world.

This is the peace of God.

I picked up these pine cones from our back yard about a week ago. I wish technology was advanced enough to provide "smell-o-vision", because the aroma of these sticky cones is nothing short of heavenly and I would really like to share it with you. Who knows...Apple, in all of their astounding "touch" capabilities, may bring "scratch-n-sniff" to a whole new level! Until then, you just have to take my word for it. Heavenly.

We've lived here five years. This is the first time I have even really noticed the pine cones, let alone made an effort to go out and pick them up. Simple things. Beautiful things.

Things I find in Space.

Wednesday, June 8, 2011

To-Do Lists

Art work by me : )

Anyone that knows me well, knows that I am far from black and white. Not that I don't have certain beliefs or hold convictions that I remain faithful to, but for me, life is lived in the gray. It is in the "in between" where experience finds compassion, where obstinacy finds understanding and where grace abounds. It is where true joy can be found - but it is also where some of our most difficult days find their struggle.

One of the times where this gray matter becomes most difficult for me is when I am put in the position to verify my illness with Social Security or my long term disability insurance. I've written about this before. The contradiction of wanting to be well, yet having to prove how sick I am. My nature is to make the best out of things. Yet, when it comes to these situations, it feels quite the opposite. Thank goodness, these ordeals happen on a limited basis.

But there is also a sort of living in the gray that happens on a day to day basis. Balancing what I want to accomplish with what I am actually capable of accomplishing can be a trick that sneaks up on me at times. When I am very sick, these decisions are pretty cut and dry. Laying in a hospital bed does, indeed, limit my possibilities. It's not where I ever want to be, but it is a place where my focus and energies can remain on one thing - getting well.

When I was healthy, prior to getting sick two and a half years ago, possibilities seemed limitless. Often times the only thing to get in my way was my own lack of ambition. Unless hindered by some sort of an injury, setting the goal to run a marathon was a challenge that was completely doable. Balancing work, family, running, hobbies... was a task that included a conscious selection on my part. All elements holding possibility.

The past two weeks have been very gray. At one end of the spectrum I have an upcoming graduation celebration and family coming for a week. At the other end, I have a flare that seems to be continuously smoldering in the background and a heart condition that is being barely kept at bay with a medication that makes me less than "energetic". Add in two parts perfectionism, one part avoidance - and you have a recipe for suffering. My first clue... not having time to meditate.

So... this is the To-Do List on my kitchen cupboard. It's actually list number two. List number one went up about three months ago and was accomplished (mostly by my husband) this past weekend. The current list includes details that are supposed to be "accomplish-able" by the 17th of June.

Unless you are the Buddha, not many human beings ever attain complete enlightenment. Even the perfectionist in me has a very realistic idea of what I am capable of. What we can hope to attain is an awareness of who we are, where we are at or what we are doing. This morning, after a few hours of ridiculousness, I became quite aware of who I am and what I was thinking...and I just had to laugh. There I was, at 7am, standing out in the front yard in my pajamas, trying to hold a hose so that I could water my flowers (number one on the sub-set list made this morning). I hadn't taken my medicine. Heck, I hadn't even taken my first sip of coffee. About 15 minutes in the sun and I felt like I was going to pass out. Frustrated at my body, I just kept pushing forward. Water the flowers by the driveway...don't forget the ones in the front of the house...oh, bring a pail out to the mailbox where the new sunflowers are coming up...bring the hose to the back deck...make sure to spray the pollen off the furniture...sweep the pine needles... STOP!!!!!!!!! This was the complete insanity that began to flood my brain. All the while - feeling more and more sick. Barely able to walk in a straight line, I dropped the hose and walked back into the house. 

This is me, in my chair. These are my pajama bottoms, of which I am still sporting at this very moment (12:42pm). I have no intention of taking them off today, nor do I plan to go pick up that hose or even look at a list. Today I am going to be well - both physically and mentally. My ego would like to convince me of the importance of a perfect home, a completely organized graduation and the title of "Super Women". 

If I listen closely, my heart tells me that what matters most is taking care of this moment. And my taking care of this moment is the greatest gift I can give my family. 


Friday, April 8, 2011

There's No Place Like Home!


Home is a good place to be.

There is a lot packed into that little statement for me. I have always enjoyed being "home". Especially when I was working, it just seemed that there was never enough time to just "be home". In fact, I used to always say that if I were independently wealthy and did not have to work I would be just fine finding plenty of things to do at home. The creative side of me had a never ending list of (which I love doing), yard work, remodeling, baking, painting, writing, reading, running... the list goes on. Never enough hours in the day.

Becoming chronically ill has had an enormous impact on my "being home". For one, many of the things on my list of possibilities are, well, no longer possible. Two, other than getting out for doctor's appointments, hospitalizations and occasionally visiting family, I am pretty much stuck at home most days. Hour after hour, day after day, week after week, month after month, year after year. And this winter seemed especially long. So when we made the decision to visit family in Florida, I could hardly get my bag packed quick enough.

And then reality sets in, and one quickly realizes the mixed blessing of going on vacation. Travel, for anyone with a serious health condition, presents a number of difficulties and potential problems. The simple act of packing alone becomes a major endeavor. What would have taken me an afternoon to accomplish now takes me days. And the question of "what if" becomes more serious than just preparing for a rainy day. Two days of my packing were consumed with documenting all of my doctors, their names and addresses and emergency numbers. I then needed to come up with a complete list of all medications (including brand names and dosages - of which there are thirty-three different ones), signed release forms and a copy of my living will. Between the medical paperwork, reservation confirmation papers, airline tickets and car rental information - we almost needed to pack a two drawer filing cabinet just to go! Add to the mix my difficulty keeping track of things and general state of "fog" and this part of the preparation becomes quite stressful.

Once the paperwork was taken care of, I then needed to organize my actual medications. Not only did I need to plan out each days hourly "cocktail", I needed to plan for emergency situations. Pain medications, muscle relaxants, anti-nausea medications, Epinephrine injections, inhalers, emergency steroid injection packs, pancreas and GI medications, laxatives and antibiotics...just to name a few. These are all the medications that I do not take on a daily basis, but are needed when things act up or I have an allergic reaction. Which could happen when I eat something or get too much sun. I carried my luggage on the plane to avoid the ridiculous baggage fees. I wonder what the TSA people thought as my bag passed by for their viewing pleasure!

Eventually I got to the issue of clothing. Trying to pack for hot weather, yet making sure to not expose too much skin presented a few challenges. I did find a nice cotton long sleeve blouse that I had stored away years ago that became my daily cover-up. Most days I have difficulty keeping warm, so this worked out perfect. And at night, I just covered up in blankets and towels.

Probably most difficult of all are the actual days of travel. There were a couple of times this go around that I simply felt like traveling was not an option for me any more. I forget how much time I spend sitting or laying down while at home. If you think about it, once you make your way into the airport you are in a constant state of motion. Because I deal with extreme fatigue issues, simple tasks like pulling a suitcase or going through the TSA check point (lifting things on to the belt, taking off all your "stuff", gathering things all back up again) or walking half a mile to a gate are completely overwhelming. Once I reach that point of exhaustion, my ability to think clearly becomes significantly reduced. Keeping track of my ticket, driver's license, cell phone and everything else that needed to be emptied into a container became a task that left me right on the edge of panic. If these were the days when my children were younger, I truly believe that traveling in this way would not be a possibility for me. Thankfully, Dave and the kids were always one step ahead of me and there to help whenever I needed it. Often times offering before I even asked. I am so fortunate to have such a compassionate family. Where thinking of others is something that comes natural. Kids, I am so very proud of you!

Pure exhaustion.
And then there is the task of actually getting ON the airplane. When my butt finally hit the seat I felt like I had just completed mile 20 of Grandma's Marathon! Unfortunately, the welcomed relief that comes with finally sitting down and sitting still is soon interrupted by the pain and stiffness of rheumatoid arthritis. If there is one thing airplanes these days are NOT conducive to, it's moving. At all. Between the fact that the seats are now only six millimeters apart from each other and every flight is overbooked - and the fact that everyone brings their luggage on the plane to avoid the enormous baggage fees - there is absolutely no room to even wiggle your toes. The whole flight I was thinking, "Maybe I should take another baby aspirin, just to make sure I don't end up with a blood clot!"

By the time we made our connecting flights, landed in Tampa, picked up our rental car and found our way to the resort, I was, as my husband says, "On the brink of the edge!" Never has a hotel bed felt so good! From that point on, things became much easier. The resort that we stayed at was more like an apartment than a hotel room. So within a few hours Dave had gone to the grocery store and completely filled our cupboards and refrigerator with all sorts of good things to eat. We purposefully do not make "plans" while we are in Florida. Especially this time, since the priority was to spend time with Dave's sister Linda who is preparing for a stem cell transplant. This makes it much easier for me to listen to my body and rest when I need to. Our room was situated very close to the beach, so that made it easy for me to enjoy the ocean when I felt up to it. Most mornings I would walk down to the beach before the sun came up to drink my morning coffee. What a pleasure those moments were for me. Sitting there, sifting the sand through my hands, contemplating my place in this amazing world of ours. These moments were very inspirational for me and I am excited to write about some of them in the days ahead.

One of the things that made this vacation a success for me was my ability to let go of expectations. Last year when we brought the kids down to Florida I really struggled with being depressed. I think that somewhere in the back of my mind I had this unrealistic expectation that I would miraculously feel better once we arrived. It kind of reminded me of the first Christmas that I did not receive any toys as a kid. All excited and then somewhat let down by the reality of it all. Being grown up isn't as much fun as I thought it was. Well, being on vacation when you are sick is still "being sick". What I needed to do, and what I was successful at doing this time was letting go of what I had experienced in the past as well as letting go of what I expected the vacation to be. It really was a gift to me this year. I think I am finally reaching a certain level of consciousness. I am able to purposefully decide what kind of relationship I am having with the present moment. Do I want the present moment to be my friend or my enemy? The present moment is inseparable from life, so by being conscious in it, I allow myself to make the call as to what kind of relationship I want to have with it. The minute I make the decision to be friendly to the present moment - aware and thankful - my life changes. One little decision changes my entire reality.

J. Krishnamuriti was a great Indian philosopher and spiritual teacher. He spoke all over the world for more than 50 years attempting to convey through words this concept that is really "beyond words". At one of his talks towards the end of his life he surprised his audience by asking them if they wanted to know is secret to life. It is said that everyone became very excited and alert to finally  know this master's key to understanding. "This is my secret," he said. "I don't mind what happens." I'm sure that there are many people that did not understand this - maybe even more confused than they were before. And quite possibly you are thinking the same thing. But to me, this statement is SO profound. When I don't mind what happens, that means I am in total alignment with what "is". To be in a relationship with what "is" means to be in a relationship of inner nonresistance with what happens. It means to not label anything as good or bad, but to let it be. Of course, it does not mean I no longer take action to bring about change in my life. Quite the contrary. When the basis of my action is in alignment with the present moment, then my actions become empowered by the intelligence of reality - of Life itself. And making decisions based on reality are always much better for you than making decisions based on illusion.

"I don't mind what happens."
And you know what - it worked. Every day was a gift. I was much less stressed (stress is the leading cause of flare ups) and able to listen to what my body needed, based on the present moment. Not getting tangled up in what I thought I should be doing, or what my kids needed me to be doing, or what I felt my family expected from me. I listened to the moment and based my actions on what that moment was telling me. And fortunately, I have a family that supports that!

The kids resting in the shade with me.
Being able to rest while on vacation made the impending doom of traveling home much more tolerable. It was still as exhausting as getting there, but I am fairly confident that my ability to take care of myself is what kept me from getting sick along the way. I am still recovering - in fact, it's day three since I returned home - 4:30 in the afternoon on Friday - and I am still in my pajamas! And very thankful to be here. Funny how that is. Before going on vacation I was really beginning to wonder if maybe I had become depressed. Like maybe I should talk to my doctor about it. But things look so much different now. It helps that it's 60 degrees outside, my window is open and I can hear the birds singing. The inside of this house seems to have lost it's winter ambiance and adorned itself with the reflections and smells of Spring. I guess you can say that being away made me appreciate what I have. And according to this very moment in time...

I have everything I need.

I dedicate this post to my wonderful husband, who, by his unfailing love, endless patience and hard work made this vacation possible for me...and for all our kids. Thank you honey, for taking such good care of us.
I love you.

My husband, David.