“People deal too much with the negative, with what is wrong. Why not try and see positive things, to just touch those things and make them bloom?”
Boy, do I deal a lot in the negative.
Hardly a day goes by that I am not explaining to someone who seems to be at their very last breath of hope, exactly what Chronically Awesome can do for them, that I hear the negative, and remember. I remember how each thing they are saying could be exactly how my day could be, if I let it. And believe me, it’s hard to not get sucked into the “what is wrong” and stop seeing all of the good around me. Even without their voices, just on my own, the negative creeps in all on it’s own. The quote above says that if we think in positive ways, deal in the positive, then the things that we touch will bloom. On those days when negative is everywhere, it seems like everything I touch turns to a patch of weeds. It gets so depressing. To feel the pull toward the negative in the first place, and then to have all of that negativity, with my very own thoughts, my own actions or lack of action turn everything around me into more negativity. It’s the vicious cycle that takes a lush and blooming forest of wonder and magic and creates a desert of unhealthy attitude, one that in turn impacts all that is around me.
There is a fascinating thing about the desert though; it’s something we rarely think of when we pull out the desert metaphor. The desert is teaming with life. The desert is an ecosystem that, when conditions are perfect, can bloom and grow into some of the most beautiful landscape you have ever seen. It doesn’t take a special hand, or a gift for nurturing anything back to life either.
The beauty and bloom of the desert is always there, all it takes is a good eye. All it takes is removing the blinders of doubt that even a wildflower can bloom in the desert; you only need to know where and when to look for it. When you are in the desert, look carefully and you will see your bloom. Find it, touch it, make it yours.
There is no doubt, that as people who are chronically ill, we have a lot to look at in our lives that can be negative. Many of us feel stuck. We are stuck at home. We go from being stuck in our favorite chair or couch for many hours of the day only to get up and move to our bed when the appropriate hour comes along that we feel it’s “okay” to go to sleep. Some of us never bother to get out of bed. This is not a criticism, just an observation about how we, how I live. I wake up very early, make my coffee and get settled in on the couch. I like to have a few hours alone in the morning to write, set up my news and tweets, and read email. Once I get settled in to my couch, that is where I stay. What keeps me on the couch? The place I type these words? Fear, pain, all kinds of things; some easily solvable, some not so easy. It is getting better. I look outside and I see the blooming and I want to be a part of that.
There is no doubt that for those of us who are living in unrelenting chronic pain we can give that one a feeling so much power that we feel nothing will get better, and nothing will change. It’s not that we give it power on purpose; it is just so overwhelming, it’s so powerful. We feel like nothing will ever lift this heavy weight of ache and stab and burn from our bodies. The only change that we ever feel is when we go from the general pain to the intense flare. It’s just going from bad to worse. How can we make anything green bloom into beauty when we feel like this?
This is where I need something to literally bloom. Where I need beauty around me. This is when I do get up from my couch. My favorite thing to do when I can’t get out into the fresh air and the real flowers are is to draw myself a bath with lavender salts. Sometimes I am incapable of even getting motivated to get up and turn on the water. That’s where my care partner Brian comes in and saves the day. He knows when I am emotionally paralyzed and need help. He will take care of getting my bath ready for me. Then, I can lay there, for an hour or more sometimes. If I can soak up the essence of the flowers, close my eyes and transport myself to a place where there is not only no pain but there are blooms, there is life. A quiet time of guided meditation. It’s just me, the heat of the bath, and the smell of the flowers taking the pain away.
There is no doubt that when we live with melancholy, and the shroud of that special fatigue that depression brings, a fog from which we rarely can perceive that there is any light at the end of the tunnel. You know that joke about the light at the end of the tunnel being an “oncoming train”? When I am in physical pain, I can find just about any joke about my condition funny if it is presented by the right person and said in the right context. And believe me, that is a pretty wide range. I have a good sense of humor for about 9/10 of my chronic conditions. Depression however is one of those things that takes my sense of humor away, and that joke is just never funny. Maybe, just maybe at some point some of us will get a mania now and again, and the lie of mania gives us a temporary lift out of the darkness, but that has it’s own dangers and negativity.
We do, thank G_d, we do find the balance at a point, we reach a place where we can pull our head above the water and see the life around us again, we can reach for the branch that pulls us up, and on that branch we find that bud that wants to bloom. And bloom it will, if we take that chance. It’s a risk when depression takes so much of your self-worth away, but to claim it again by reaching up, and doing whatever it is that is our “thing”, that thing that turns chronic to awesome, and turns that little green bud into that bloom.
It’s at this point, with each of these times that I feel I have hit the bottom I have to remember something important. The worst of pain, the deepest of depression, the feeling that I will never get my life in control, I think of the most unlikely beautiful flowers on the planet: the lotus. The lotus blooms from mud. It is believed that the most beautiful of all of the lotus blooms in the deepest, ugliest mud. If the lotus can bloom, so can I.
So, with all of these things that we have no doubt in, all of them negative and hellish, how on earth can we possibly find positive things? How can we touch the bud of something just coming from the green, and perceive of making it bloom? How can we really take chronically ill and turn it in to Chronically Awesome? How can we find that beautiful lotus flower that only grows in the deepest, blackest of mud?
I can only tell you how I do it. Some of these suggestions may work for you; others may not be up your alley. I don’t think it takes five, or ten, or even twenty steps to find blooms amongst the weeds. Sometimes it just takes one; sometimes it just takes a good eye.
- Talk about it. I love our Chronically Awesome Support Group. I can enter the group feeling terrible. Either in pain or depressed, and by the end of the group I am laughing. I have always considered all of you, the Chronically Awesome as my friends. This did start as a vacation plan, that turned into a hash tag, then a movement, and now a foundation. I need my chronically awesome friends because I started with all of you. It’s like Gilligan’s Island. This three hour tour has turned into something much bigger. Join us and feel that friendship as though you have been here from day one.
If you can’t join the weekly group, perhaps you have a friend you can talk to. The friend can be someone who is Chronically Awesome, or not. I think that what we need at times like this is someone who will listen, empathize and not judge us when we feel down. I have someone I can talk to. Donna. Donna is always here, and ready to listen. She listens to my words, and sees me cry. Sometimes she understands, sometimes she doesn’t. What she does not understand, she asks about. She can also tell when it’s not time to ask but to just listen. What I need at that time is what I know, I know she loves me, and I love her. This idea that it’s ok that sometimes your friend doesn’t need to totally get it or have to ask questions. There are times I don’t want advice. This was something I had to learn when I was raising my daughter. As she got older and would come home from school, or work with a problem, it was my first instinct to “solve” the problem. I was full of “try this” or “did you do that”. It was always a conversation of great frustration. I never understood why she would get so angry. I had such great advice! And, of course it was a mom’s job to fix things, to solve the problems of her daughter and make everything ok. From the time I put her first Band-Aid on all the way until I sat with her when she woke from surgery or lay on that giant machine to be calibrated for radiation therapy. I was not wired to not fix things for my daughter. But, it was my daughter that, after all of that, had one more lesson to teach me. “Do you need my help with this, or do you just want to bitch for a while?” And, as hard as it was to just sit and listen sometimes, quite often she just wanted to vent and bitch for a while. So, my advice is to make that clear. When you call, or text, or see your friend let them know what it is you need. Do you want advice or do you just need to vent. That is how Donna and I get on so well. We just know by instinct, as though we are the left and right legs of the same body, working together to get to the same place. Sometimes one of us limps, sometimes we are in lock step moving forward and marching to the same tune. When I limp, Donna knows how much weight I can take, and how much listening I need.
- Write about it. I don’t write nearly enough. That’s too bad because when I get my feelings about this whole business of being depressed, or in pain, or fatigued and helpless in my life, and I get the feelings out on paper, I feel better. And when what I write spurs any kind of discussion on Twitter or Facebook, and I find out that others feel the same as I do, I feel even better. Then there are the comments on my blog, or tweets to me about how something I said resonated in some way makes me feel less alone. I cannot stress enough how important this is, and it is part of what makes the Chronically Awesome Community work so well. As a group of people coming together with so many different conditions from all over the world with a common goal of fighting what could be so morally decimating and turning it into two words, that when said or typed together can’t help but bring a smile to ones face, or make that tweet, that Facebook post, or that blog entry just a little more powerful. This act of publishing what I write, getting that discussion from other Chronically Awesome Community Members is one thing, and I strongly recommend it. So write! * Get your thoughts into words, get your words to others who have so much in common with you, then get that feeling and that feedback.
One word at a time. There is another great thing about getting your words out there, and that is the chance that someone who has never heard of Chronically Awesome could come across your post, and you could have an opportunity to share what Chronically Awesome is about and what the community has done for you. I can tell you from experience that nothing feels better than helping someone else. Even if you choose to save your writing for your own personal journal, as I have done for some of my own writing, things not fit for public consumption; it feels better to get those words out too, even if you keep them private. It’s like telling your darkest secrets to your most trusted friend.
- Work on a project. I don’t craft or do anything visually creative except photography. Here is the rub: I don’t often go outside. That minimizes my choices in my chosen art field, and of late my photography has suffered for it. I do enjoy going to the park and snapping pics, filtering them in many unique ways and seeing what I can create. What do you do? Do you create anything that makes you happy? Even working at it a few minutes a day can distract you, and make you happy. Just as my favorite thing to do is difficult for me because of the emotional condition of agoraphobia, your favorite thing to do may be difficult because it causes physical pain. Often you can find ways of adapting what you do, doing it for a shorter period of time, or you may find that some things are so enjoyable that you can forget your pain for a while. This is for you to decide, and I would never urge you to push yourself to the point of pain or injury. I would suggest that you get creative. A friend of mine that can no longer draw now makes collages and scrapbooks. Cutting is difficult so she has created a system with her daughter. She has her daughter cut out what needs to be cut and she does the rest of the work. It is a great way for them to do something creative together, and the time they spend chatting and laughing as they work on their projects has been priceless. It’s about using your already creative mind to get just a bit more creative. If your Chronically Awesome condition has limited your finances and you can no longer afford to buy supplies, please let the foundation know. We are putting craft kits together so that friends and members of the foundation can still have some supplies to create with. Just email me firstname.lastname@example.org for information.
- Books, Movies, Video Games. Do you have an escapist way of entertaining yourself? Do you have a way to get out of you and into some other character for a while? For awhile I found it hard to read books. I was able to listen to books, but sometimes that made me tired, so if I can find a book to listen to that I can also read along with, it keeps my brain active and helps keep that love of reading alive in me. Each day Brian and I used to make a point to watch a documentary of some kind either from Netflix or something we could catch in the morning while we have our coffee on one of the gazillion cable channels we had. We mostly enjoyed biographies, and science programs, as well as art, music, and history documentaries. Blogs were also a good length for me to read, and often helped me see how others who are also Chronically Awesome are dealing with similar situations as my own. I also try to share those blogs (if they have share options) with the entire community on our Chronically Awesome Bloggers page of Facebook and by tweeting with the #blogsupport tag to populate our Blog Support Paper.li. Of course, most people blog in shorter posts than mine. I also love to play the wii. I am trying to get my new friends to play the sword fighting and other similar games with me. I know I have some pent-up aggression in me I need to get out, and it’s far better exercise than guitar hero. Dance Dance Revolution, on the easier settings is great exercise. It would also be a riot to see some of these people play Dance Dance because many men have an hysterical lack of rhythm. My Alice in Wonderland slot machine is totally mindless and great for painsomnia.
No matter what you do, remember:
You are not your illness, and people want to hear about what you have been doing, they want to know that you walked in the park, that you attended a support group, that you started a new scrapbook. Sadly, when they ask how you are, most people cannot deal with the intricacies of your most recent doctor’s appointments, all the blood you had drawn, and the possibility of the most recent diagnosis you are being tested for. If they do want to know, don’t overwhelm them.
Being Chronically Awesome means that you no longer have to always think about your illness. That could mean getting on the phone and chatting awhile with your friend, and asking about his or her life only. What a great gift you can give them. Ask questions about what they are doing. Ask about their kids, their job, and their hobbies. You will make your friend very happy; you will make a flower grow right there.
If your friend is also Chronically Awesome, ask them about those things that you know others are not asking, are not taking the time to get the details about. You know they are not asking your friend, because your friends and family are not asking you. Your kindness will be returned tenfold.
Think of those things that will water a garden of positive. That will help the flowers bloom. When we work in our garden with negativity or we neglect our garden all together, we will feel the dry dust and weeds kick up inside of us. We will feel more ill and less awesome. When green sprouts up, that means life, and a life is what we are all looking for. We are looking for something beyond this stagnation that we can, with no doubt fall prey to.
We are looking for something that will quash any doubt that we or anyone else may have in what we know we can do. We are looking for anything that will turn that chronically ill into chronically awesome.
Originally posted on www.chronicallyawesome.org June 2, 2013. Edited for “reasons”.
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