Showing posts with label Kindness. Show all posts
Showing posts with label Kindness. Show all posts

Tuesday, June 14, 2016

What Can I Do?


The Orlando shooting happened this past Sunday morning. As was the case of many on social media, my facebook feed was inundated not only with posts of sadness at the world's recent events, but it was full with aggression. The combination of this horrible and tragic event, on top of all that is going on in the political world right now, spewed anger and hatred all over a feed that is generally speckled with posts from artists, spirituality websites, funny cat videos and summer vacations. They simply went away. Or some facebook algorithm pushed them so deep that even my unusually high amount of surfing today didn’t reach them. Understandably so.


The first time in my history with facebook I had to unfriend someone. Someone I hold dear. Someone I would rather keep in contact with. Someone, who like me, has suffered great illness and understands what it means to still be walking on this planet. This was very hard for me, for a number of reasons. Mostly because I care about this person, but also because I value the opinions of people who don’t think like me. I truly do. But this friend became so angry, so full of hatred, their language so hurtful that the conversation was just shut down. It no longer retained the basic characteristics of “an informal exchange of ideas”. There simply was no exchange. One view, full of anger and hatred, limited in fact and gross in overgeneralization - with an unwillingness to hear or respect the views of others. I had blocked this person from showing up in my newsfeed a while back, but today my attention was brought to something this person had said recently. Upon reading the words written, I decided that as difficult as it was, I had to do something. My passive “hoping” that the situation would resolve itself or that I could maintain the relationship by avoiding this person’s behavior was no longer a solution...if it ever was.


Feeling not well enough to really do anything physical today, I spent an unusual amount of time paging through my facebook newsfeed, surfing news articles and listening to online news radio. I purposefully read and listened to as much as I could from both sides of "the story”, trying not to get involved in sensationalism on either end (which is basically impossible, but I gave it my best shot). The Orlando news, intertwined with all the political agendas on both sides, made it intensely difficult. Beyond my ideas of why this happened or how it happened or what the solution is, lies a profound sadness and the heavy feeling of helplessness. Over and over and over again, the question in my head... What can I do? What can I do? What can I do? This sense that the world has gotten so out of control left me feeling like the only thing I truly can change is me. Overwhelmed with the bigger picture, yet longing desperately to do something. What can I do?...


Then, I stumble upon a video shared on facebook of Stephen Colbert’s reaction to the Orlando shooting. These are the words he ended on,


It's easy, it's almost tempting to be paralyzed by such a monstrously hateful act, to despair, and say, 'That's the way the world is now.' Well, I don't know what to do, but I do know that despair is a victory for hate. Hate wants us to be too weak to change anything. ... Love is not despair. Love makes us strong. Love gives us the courage to act. Love gives us hope that change is possible. Love allows us to change the script. So love your country, love your family, love the families and the victims and the people of Orlando but let's remember that love is a verb. And to love means to do something.


And again, as I surfed aimlessly, I found myself watching a video of the Dalai Lama at the Youth World Peace Conference. In his opening remarks he offers a few moments of silence for a time of prayer and then says,


Although some are quite skeptical about the effects of prayer, it has to come through action. Serious action, continuously, despite difficulties and a lot of obstacles, we cannot lose our determination, our courage. And on top of that, some prayer is ok, no harm. Without action, it is just prayer.


Love, in action, is compassion. Compassion, by definition, is “a feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate that suffering.” What can I do? What can I do? What can I do?


There was a lot hate and anger and finger pointing and blaming and judging on facebook today. So much so that by tonight I felt like I needed to sage the house just to help myself let go of it all. It hung heavy on the humidity that came rolling in with the storms. Heavy and dark. I understand these reactions. Because that is exactly what they are - reactions. And quite often, they come fast and they come heated. But one post, one very well written and brave reaction to an article describing the complicated history of the shooter, dared to show compassion for the shooter. She wrote, “While I utterly, utterly condemn his atrocious actions, I also believe we must extend some compassion to him for his own distress.” Unimaginable? Maybe. Impossible? I don’t believe so. And it really made me think.


After sitting here today, reading all the news articles and surfing through all the posts, I found myself so angry, so full of what feels like hatred to me. A justified hatred. A hatred that comes easy in light of such tragedy. A hatred that comes easy when listening to racism and sexism and rape and murder and lying and all that fills our news. We’ve had enough. And nothing seems sweeter in light of fear, than justified hatred and anger. Yet nothing is further from the solution.


Compassion must have the final word. And compassion does not mean agreeing with everyone. And it surely does not mean letting people get by with things that are harmful. Just as I had to “unfriend” someone very important to me, there are times when difficult things have to be done (to speak on an extremely simplified level) or said. Compassion is not easy. For one thing, it threatens our ego. In order to have compassion you have to put yourself in someone else’s shoes. Let go of what you know. Move toward the pain of the world, beyond bias, beyond prejudice and fixed opinions and open your heart to people - those we like and more importantly, those we don’t like. Compassion counteracts our tendency to stay stuck in our way of thinking and counteracts our resistance to change. Instead of acting or reacting with aggression when we are provoked, endlessly perpetuating the cycle of aggression, we trust that we can interact with others from a place of inquisitiveness, calm and caring, without feeling threatened.

I don’t claim to know the answers to all of life’s difficult questions these days. But this I do know, the answer to even the smallest of these is not hatred. It never will be. And some of the most daring work we can ever do is to challenge our own way of thinking - our fixed ideas, the labels we are so invested in, our conventional ways of experiencing things, our opinions of right and wrong. It’s not until we do this that we can move beyond bias and prejudice and actually care for people, actually make a difference. With all that I feel helpless about, this I can do.  

This I can do.  


Theresa

Thursday, February 25, 2016

Rest And Be Thankful... An Update

Photo by David Ralph Johnson
"Rest and be thankful."   ~William Wadsworth

I have so much to be thankful for these days. Even in the midst of all that is going on with me health-wise, there is never a moment that I am not thankful for all that I have. On two separate occasions now, my neurologist as taken the time to ask me how I am doing mentally. It's an odd moment when a doctor gets quiet and asks you if you ever think about harming yourself, if you are ready to "give up". A moment packed full of emotion - alarm, embarrassment, defensiveness, worry, confusion.. But even with all of that going on, there is a clear and very focused "me" that says, "No, it's simply not an option." I'm thankful for that. I'm thankful that even in my darkest moments I long for life. I long for my family and my friends. I long to live my days, my moments with the man that I love with all of my heart. These things keep me moving forward. These are the things I take rest in.

I've not yet taken the time to really let people know what has been going on with me the past few months. I've eluded to it in my blog, on facebook and in messages to friends, but I've not really been too public about the nitty gritty. Not so much because I don't want people to know. More because we (myself and my medical team) really have not known. And until things become clear, I would rather not worry people. But, as is usual with these situations, it seems to be dragging on so I thought this would be a good time to give a bit of an update.

Last September, after tapering for months, I finally made it "off" prednisone. The first time since becoming ill in 2009. It was a horrible tapering with an even worse outcome. But I was determined to see what happened. I was determined to see if my body could figure things out on it's own. I wanted to know if I could "recover". Quite often when going off a medication, there is a period where things get worse before they get better. I wanted to know if this would be the case with steroids. Well, for me, it was not. I ended up creating an inflammation process, a kind of domino effect, where all of my tendons and muscles were affected. Wherever there was a tendon...I had tendonitis. I could barely walk. Then it crept into my muscle tissue, causing some rather serious conditions, mainly in my left shoulder. Of which I have had various treatments that have been unsuccessful.

Then it began to affect me neurologically. My doctors immediately put me on higher doses of chemo and steroids. For those of you who understand the medication regimen, my cocktail consists of Cellcept, Methotrexate, Hydroxycholorquine, Prednisone and a host of other medications for symptomatic treatment. A total of 37 pills a day and weekly injections.

These symptoms are quite frightening. I began having weakness and numbness in both arms and legs. It then moved into my torso and my face. This was also accompanied by extreme nerve pain all over, but especially in my legs. Nerve pain that would immediately wake me up out of a deep sleep or prevent me from sleeping altogether. Some days better than others. Some days difficult to even stand upright. This, combined with all the tendon and muscle pain, the fatigue, the headaches, the GI problems - well, it became overwhelming. That's what led to the hospitalization in January. It is also what kicked off all the extensive testing, of which I am still doing.

The number one suspect - MS. It's not the first time they have suspected this. Over the years I have been tested and the results have been inconclusive. I have had one "bad" spinal tap and two "good", although they have not been completely clean. I have five lesions on my brain that have remained unchanged over the years. My neurological exams have declined and the nerve conduction tests have slightly decreased, with some new issues. But nothing that conclusively says that MS is the culprit.

So this is where I am at right now. My team of doctors are working together to decided who should take the lead at this point. If there is no new diagnosis to be added, then my neurologist does not want to be the one deciding which medication I should be on. They all agree that something needs to change. The problem with that is that any "new" medication is going to be quite risky for me. It's a step up (or down, depending on how you look at it) on the scale of possible negative side effects and complications. They're just more dangerous to my already compromised immune system.

I'm still in a holding pattern. Things got a bit delayed the past two weeks when my rheumatologist got ill and was out for two weeks. My team has been good to communicate with me every few days, for that I am extremely thankful. It makes a huge difference to know I'm not lost on the radar. There have also been a number of other things that have kept me going during this time.

YOU.
YOU.
YOU.
YOU.

And...then there is YOU. My family and friends. Those near and those far who have continually checked up on me. Those of you who have "liked" my posts on facebook, commented on my artwork, BOUGHT my artwork, sent me messages and cards, stopped by for visits and basically supported me every step of the way. For me, oftentimes captive to these four walls, this outpouring of kindness has literally been what brings me through each day.



I am so thankful for you. I hope you know that. I hope you know how important you are to me and how much I cherish your friendship and care of me. I was completely bewildered (and overjoyed) by your response to my need for a new bed. Within less than a month, my dream became a reality because of you. And let me tell you, I could write another thousand words about how helpful this new bed is. Immediately I noticed a change. Immediately I was able to get more hours of restful sleep. Immediately I noticed a difference in my waking hours because of that sleep. All because of the compassion of family and friends. You purchased my artwork and in turn, you gave me rest. What a beautiful thing. Truly, truly beautiful and I thank you with all of my heart.

This has been a tough one, that's for sure. And where I go from here is a somewhat worrisome for me. But this I know - I can do anything with my family and friends beside me. To really know that you are there.

This I take rest in.


Peace,

Theresa





 

Thursday, January 28, 2016

You Get What You Give


Photo by David Ralph Johnson
We don't want to believe it. But it's true. We don't want to believe it because life is hard. It's hard and it's generally not fair. So when someone throws out a platitude like, "You get what you give", we believe it with cautious hesitation at best. Or we don't believe it at all, because we try so damn hard and the bad stuff just keeps on happening. So why try at all?

It doesn't matter who you are or what your particular situation is, we have all had this feeling at some point in our lives. It could be a relationship issue, it could be a career issue, it could be a financial issue, it could be a health issue, it could be a self-esteem issue...however many unfortunate circumstances there are in the world, there are just as many people who can't seem to get a break from them, no matter how hard they try. In fact, some people seem to have no luck at all.

I'm not hear to disagree with the fact that life isn't fair. Because it isn't. Stuff just happens. What I'm here to write about is what we do with that unfair stuff. How do we process it and in the end, how do we react to it. Because, quite frankly, sometimes we forget. Sometimes I forget.

I'm on year seven of fighting Lupus, Sjogren's, RA and a host of other health problems that popped up and tacked on along the way. The beginning was extremely tough. Life threatening tough. The middle was full of ups and downs with lessons learned in between. Currently, I'm not in a good space health-wise at all. I had a flare last September that threw my body into a tailspin and I am fighting desperately to climb back up. Many complications, old and new. Some neurological symptoms that are quite frightening and we are still trying to figure out. Which means lots of trips to the hospital and lots of tests, many which are not very pleasant. And if you know anything about lupus, stress of any kind only exacerbates the problem.

How have I been handling this recent phase? Not very well at all. I feel as though this is probably the lowest I have ever been. And my doctors know it because each one of them has asked me if I think about suicide. Even the doctors in my most recent hospitalization questioned me. I just can't stop crying.

Let me stop the worrying here. I never, never think about suicide. Ever.

Would it be wrong for me to think about suicide. Well, it wouldn't be helpful...but I don't believe it would be wrong. It's a perfectly normal feeling like joy and sadness and worry and fear and all the rest. It just demands a very different action on the part of myself and of those around me. But I do think about not trying. I have a phrase that will get stuck in my head in times like these and it's, "I can't do this anymore." I find that when I'm crying, these are the words that I repeat over and over and over again. Sometimes out loud when my sweet husband holds me in his arms. This is how I felt when I went into the hospital last week. This is how I felt when I went to the hospital yesterday.

And then this happened...

I was a bit worried about my state of mental health the last time I visited my doctors. I knew I needed to kind of "get things under control". Not in a fake way. In a good way. For me and for them. Too much emotion can distract both me and the doctors from the real issues. And I was confident this needed to be about my diseases and not my mental health. So I decided to be as positive as I could and as pleasant as I could to everyone I came into contact with. It was odd, in a way. I felt a little bit like I had lost control of everything and the only thing I had left was to be kind. A bit like giving up in a good way. Maybe that doesn't make sense, but it did to me. So I just smiled.

At each one of my doctor appointments I was met with exceptionally thoughtful nurses. Each one of my doctors spent an unusually extended amount of time with me in which they were not only incredibly compassionate, but went overboard in accommodating me and making themselves available to me when I left their offices (giving me phone numbers and emails...) I even had a doctor walk me down the hall, take my coat and pull the chair out for me when I sat down to schedule my next appointment.

I had an hour or so to spare in between appointments so I visited the hospital gift shop. In there I had the most lovely conversation with three women. Found a great sweater that I bought for myself, tried it on and had everyone in the shop complimenting me. I left the store with the biggest smile on my face only to be greeted in the hallway by someone offering me free coffee - which I needed desperately. I walked down the hallway and toward the pharmacy, which is where I met this man...



Meet Thanh-Tran.

I first saw him as I was walking to get on the elevator. I could hear all this commotion down the hallway and I looked to make sure everything was okay. Noticing that people were all laughing and smiling, I proceeded into the elevator. Just as the doors were about to close, I saw a shadow coming toward me so I put my hand in between the doors to prevent them from closing. As they opened back up, there he stood. About a foot from me with the absolute hugest grin on his face. He was about to step in when he realized the elevator was full. Without hesitation, he put his fingers up to his lips and blew me a kiss and waved good-bye. Without hesitation, I blew him a kiss back and the doors closed. There I stood, my back to about five other people, wondering if anyone else noticed I just blew a kiss to a perfect stranger! All I could do was smile.

I got off the elevator, walked to the pharmacy and found my place in line. Within seconds the man in the bright red beret, red scarf and the American flag tie had entered the room. No, let me clarify. His high pitched, sing-songy, full of life and laughter, Vietnamese infused voice entered the room about ten seconds before he did. Not one person remained unaffected. He shook hands, gave kisses, did little dances, raised his arms in celebration, jiggled his tie and repeated, "America intelligent! Good people! Good doctors! Good life!" he pointed out those he knew across the room with a "Hey! Long time no see!", and those he didn't with a "Hey! You beautiful today!" and walked right over to me.

I got out of line and the two of us sat down together. I had no idea what I was doing.

Within moments I was talking to Thanh-Tran, Vietnam veteran, highly decorated, Vietnam lawyer ranked number one in a class of 3000, married to a retired nurse, father of four, grandfather of seventeen, disseminator of all things positive. In between his little bits of wisdom and snippets of life history, he would would turn his hand palm side up, gently place it under my chin and randomly interject, "You so beautiful. You so intelligent. You so lovely my daughter" and then pick up where he left off. Just like that.

I learned about his love for our country. I learned about his life in Vietnam. I learned about the importance of staying active every day (which was accompanied by a dance befitting some sort of Irish jig). I learned about how important it is to have good friends. I learned about how we have to be thankful for good doctors. I learned about what the pins and metals meant that decorated the front of his beret. I saw pictures of when he was young and living in Vietnam. I saw a picture of his wife and of the little plastic document that seemed to verify it all.

I wanted desperately to capture this moment so I asked him if I could take his picture. He immediately responded with, "You take picture. You. Me." I pulled my phone out of my bag, stood up next to this tiny little man and tried...yes tried to take our picture. Just when I would be ready to take the picture, he would turn his face away from the camera and kiss me on the cheek.


And just like that... He was gone.


But never from my heart. This man changed my world. In the blink of an eye, in the breath of a laugh, in the touch of a hand...he changed my world.

He taught me what I had seemed to forget. "You get what you give." And no one knows this more than Thanh-Tran. You see, you have to put it out there friends. When life isn't fair, when you absolutely need it most, you have to put it out there. You can't lock yourself in that little room of hopelessness and despair. You have to give up the fight. Yes, I said give up the fight. You have to realize you are not in control. Keeping the illusion of control only only keeps us armed and protected and or defenses up. We have to let go. Be vulnerable. Be authentic. And give.

If you're feeling hopeless, give hope to someone. If you're feeling scared, give comfort to someone. If you're feeling sad, give happiness to someone. If you're not feeling loved, love someone. If you're feeling angry, be kind to someone. If you're feeling frustrated, be patient with some one. If you're feeling too tired to care, give compassion to someone. Do something. No matter how small. Give it all up and be human with someone. Relate. Understand. Be vulnerable. You see, you get what you give - and you get it when you need it most.

I believe Thanh-Tran needed a kiss when that elevator started to close. And you know what. I gave it to him. Without thinking. Without hesitation, I blew a perfect stranger
a kiss.

Peace,

Theresa





Monday, May 16, 2011

Just One Of Those Days

Some days come much easier than others. That's a pretty generalized statement, I know. But so true, none the less. Some days life just seems to work out in our favor. And then other days...well, we just wonder, what the heck? We attribute it to things like bad weather, getting out on the wrong side of the bed and the infamous "them". You know, "them". Those people. The ones that work for the IRS, the ones that move our stuff, the ones that hide our socks and purposefully find us on the highway when we are in a hurry. Those people.

I write in jest. But for people living  with chronic diseases - those "some days" cannot only be frustrating, but they can be painful, relentless and frightening. Those "some days" come when you least expect them. They come in the middle of your best days, they come at family gatherings, in grocery store isles, in movie theaters, at the gas station, in the car, while getting your hair done, on walks with your children...they come ten minutes after you have just taken a shower, curled your hair and picked out an outfit to have lunch with a friend. In fact, the best way to insure their arrival is to make any sort of a plan at all.

Last Friday I began having one of those days. The first indicator was an increase in neuropathy. Numbness and tingling, shooting pain, unable to balance on one foot, right hand doesn't work 'right'. And then the stiff neck...and then the headache...and then the vision problems...and then the diarrhea...and then the painful joints and muscles...and then the pancreas pain and eventually my heart starts to beat irregularly, sometimes leading to tachycardia. Not a pleasant experience at all.

I managed through the weekend pretty well. That's a Mom thing. Taking care of my family is good for me. It's good for my soul and it's good for my mind. But by last night, things had progressed and after only a couple hours of sleep, we were contemplating a visit to the ER. Have I mentioned how much I despise emergency rooms???

We made it through the night and were at the hospital by 7:00am for an already scheduled appointment, followed by IVIg. I figured if there was anything that needed urgent attention, they would catch it. After a lot of blood work and a couple of phone calls to my doctor's, it was agreed that we could proceed with IVIg. Being that this is also my chemo day... well, it was just one of those days. Except...

This is what I came home to:

  
A couple of months ago I finally made the decision to have someone come into our home on a weekly basis and help me with cleaning. It was a very difficult decision for me to make. Learning how to give up control take care of myself has been one of the hardest things for me. Little did I know that the women on the other end of that phone call would be such a beautiful person. Within moments of our meeting, I realized what a blessing Roxi is. Simply having her walk in the door, I am filled with the positive energy that emanates from  her. Honest, kind, compassionate and SO easy to talk to, there is never a lack of things to say.

Somewhere in between cleaning houses, spending time with her children and grandchildren, church work, gardening, yard work and taking care of her own family - she prepared this meal for us. And this meal is not just any meal. This meal is a casserole made with fresh organic beef off the farm and tomatoes from her garden, canned pickled beets, home made buns and frozen sweet corn...from her garden, of course, and the most amazing looking home made apple pie I think I have ever seen. WITH apples from her trees!


Mother Teresa has a quote that says, "We cannot do great things on this earth, but we can do small things with great love".


This was an act of great love.

And this day, this "one-of-those-days" kind of days, I am thankful beyond measure.

Oh, and by the way....

It was delicious!

Tuesday, April 19, 2011

R.A.O.K.'s





Lunch and flowers from a dear friend…




Surprise Easter wishes from my cleaning lady 
(a.k.a. Superwomen/friend/all around beautiful person)…


I
Am
So
Blessed.