You don't look"Disabled"...

Can you see inside? 

You look at me and you see an able person. I look "fine to you" and you hear the words "I am a Yogi" and you see this twisted pretzel of a person standing in a handstand or on one arm, all muscle and just smiling. Then you ask me what I do and I reluctantly let you know that I have been disabled for about 11 years now. You hear the word "disabled" and you see the symbol of a wheel chair that is on that blue disability tag that is painted in that parking spot in front of your local super market. You look at me and don't see any physical deformity, you see no wheel chair or blood huge marks or scars on my body. You see me walking (that particular day) perfectly fine. 

WHAT YOU DON'T SEE...or even consider is the inside workings of the human body. Do you know that all my bones, organs, brain...etc is fully functional. Why don't you consider this part of the human machine and that it might be in severe mal-function? 

Immediately I am a liar and can't possibly be sick enough to be "disabled". I am functioning fine this particular day and so I am NOT "sick enough" by your judgement. 

You didn't see me yesterday as I crawled on hands and knees from my bed to the bathroom in mind-numbing pain to vomit over and over. You didn't see me as I cried my eyes out because no injection or narcotic was strong enough to kill the pain of my deformed spine and nerve damage caused by this condition. You don't know all the side effects and repercussions that chronically ill patients have to suffer from their medications. The way I grasp at my painful intestines and cry because they don't function properly anymore. Can't think straight enough some days to make regular, every day decisions because of the brain fog that has clouded my mind. All of this now cloaking my emotions in depression and sadness at my lowest times. 

I spend more than half my life at multiple doctor's offices managing a blood disease. CAN YOU SEE that from where you sit? Can you see other people's (and my) nerves on my exterior to know that we are not broken inside? The answer is, NO. You can't know what a chronically ill person goes through when they are having a "bad day". Some chronic illnesses leave you with good days, and bad days. YES.....we chronically ill want to embrace every single good moment. When our body is functioning at it's best we went to take walks and hikes and whatever we can embrace to to that day. We WANT TO SMILE ! 

MY GOODNESS....we want to appear and be as "average and normal" as we can that day. Those other days which are so challenging for us and for people like me, so painful, that we want to REALLY LIVE....REALLY HOLD ON to those GOOD DAYS ! 

Still, this label of "disabled" apply's to myself and others like me. There are whole months worth of time when I am stuck in my house. Sometimes confined to my bed even. You---as an onlooker wouldn't know that by seeing me on a "good day". 

Please, rethink what you know about a "disabled" person or any person for that matter. Please don't judge someone's suffering. You can't possibly quantify their pain or distress. Perception and view point is everything in our lives. Be compassionate......and know that there is usually more under the surface than you see in everyone's outer shell. 

13 REASONS WHY "YOU DON'T LOOK SICK/DISABLED" IS NOT A COMPLIMENT ! 

disableism:

soooyeahanyway:

1. I am ill and I am disabled, and this is what I look like.
2. What do you THINK disabled or ill people look like?
3. It makes it sound like you think disabled people “should” look a bit gross or a bit wierd.
4. It makes it sound like I have to prove my illness to you.
5. It creates a hierarchy of what one ableist acquaintence called, “Like, you know. Disabled-disabled and normal people disabled. Like, you’re disabled but you’re also normal. You’re disabled but you’re also not really disabled because you’re also like us.” That is not okay.
6. It makes it sound like if I did “look disabled” then you’d either think less of me or you’d believe me more.
7. For the same reasons you shouldn’t say to someone, “You don’t look Jewish!”
8. For the same reasons you shouldn’t say to someone, “You don’t sound black!”
9. It often sets the conversation up in a way where you are the judge and you can either validate or invalidate my disability and how much it affects me.
10. Neither my illnesses nor my disabilities are totally invisible if you took the time to learn about them and decided to pay attention.
11. It makes you sound untrustworthy. It makes me think you’re going to be the kind of person that will jump to conclusions about my health if I don’t look or act in certain stereotypical ways. Can I laugh and have a good time around you without you implying I’m cured or dismissing my conditions? (Because it really sucks when you do that.)
12. It feels really dismissive and discouraging.
13. It is dehumanizing. 15% of the world’s population is disabled. We come in more shapes and sizes than able-bodied people do. Whatever a disabled or ill person looks like, that is what disabled and ill people look like regardless of your preconceptions.

As a person who is extremely visibly physically disabled, hearing someone say this to a fellow spoonie with a invisible illness cuts me to the bone. As stated above, it makes me feel like you think I am less than. It makes me feel like you think people who look disabled are ugly, therefore I am ugly. You must think so much less of me than you do this person who ‘doesn’t look disabled’. This is an insult and invalidating to all people with disabilities.

Source:
http://thischroniclife.tumblr.com/post/121574535999/13-reasons-why-you-dont-look-sick-disabled-is

Just Breath...

Through tough times there is always Yoga. 
As I continue with my Yoga study at this moment in my journey, approaching my Spinal surgery date, I find it important in my Svadhyaya (self study) to stay focused on Samtosa (contentment with life as it shows up).

I am nervous and am cranky and unfocused. I am needing Yoga more than ever. I am realizing the importance of my focus toward Ahimsa (self judgement or inner dialog). I need to be gentle with myself in this hard time. Understanding of my own fears and unease related to this challenging situation. At the same time I feel the best thing is to, through asana and meditation to release those fears in realizing Isvarapronidhana (surrender to a higher power). We can only do so much for our self and for others. I will take time to worry and I will also take time to let go of this worry. Feeling grateful for Yoga today.

Focusing on Pitanjalis 8 limbs of Yoga and the Yamas and Niyamas. 

By: Dragonfly

No time zone on the mat

It is true. TIME is a perception. When I zone into my practice time just flutters away and all that exists is nothingness. It feels as if the world as we know it has floated away. I find a place that is void of marks, the way we mark moments, minutes, hours, days. Smooth and without dots and dashes is the way I am when I am breathing and moving in this wave-like journey when i am there on my mat. My body has this fluid-liquid-like state and there is no yesterday, and no tomorrow. There is only NOW....in and out of my breath and ME.

Sometimes it is hard to want to come back from a place that is so non-script and void of naming. Hard to want to come back to a world that is full of suffering and pain. However, to know that I can go to this place at any time. To know that I can have this practice at my disposal in my mind, in my heart and in my breath at any time I need to use it is wonderful.

Admittedly finding my yoga-zone isn't always an easy task. My heart isn't always in it and sometimes finding that release and surrender isn't always easy. Practicing yoga is still always possible. It is always possible to breath. It is always possible to take note of my breath. I can always notice that I am breathing fast and short, for example and always notice that I am "holding the breath" due to stress. Maybe I can't settle myself that day enough to sit and meditate because I am too antsy but I can take a jog because that is the Yoga my body is asking for and so I do it and then I have expended the energy my body needed to. I do find that after that I am finally able to flow through my breath to some asana and then finally to some stretching and lastly to my savasana. Lovely, lovely savasana.

Life has brought me to this place. A place I never knew I was looking for. I never knew it was missing from me. A place where I can finally just begin to really SEE ME. In that place on my mat where there is NO time.

By Dragonfly

Entry inspired by this article:
http://www.yogitimes.com/article/concept-notion-time-yoga-slow-down-present

Yoga Found me Today- it's found me for good.

I like the definition of Yoga that states:

"Yoga is obtaining that which before was unobtainable"

First I am there because I need to be. I am anxious and hurting and have hope Yoga will be my guide and answer. My asana (yoga poses/movement) and breath are leading the way and I am struggling to find a flow and rhythm. I am holding each pose several breaths ---I close my eyes and deepen my breath searching for release from pain.

I feel my mind racing through it's worries and it contains me. I breath. With every pose my breaths are longer-- slower and deeper. I am saying the Sanskrit in my head as I am doing my Classical Sun Salutation. It is me using my brain to try to remember all the pose names. My gaze is blurry as I feel my body start to leave the house I live in, and my worried world. My breath becomes my water and I swim now through the motions - - the pose names float away. Like riding on an ocean I flow through the poses and my body-mind surrenders to this peace, this calm that Yoga is. There I am, where I never thought I would be today. My pain has dulled, my head and body is light, my body is strong yet soft and I move without thought.

Yoga has found me and I have only just begun a journey which I feel is going to bring me where I am meant to go in life. It amazes me sometimes the turns that our path take. Where I THINK I should be headed vs where my path will actually lead me. This past January I started into the Yoga Teacher Training program at the Southwest Institute of the Healing Arts with intention of continuing on with education there into being a Yoga Therapist. When I started I wasn't sure if I was going to be to complete the whole 800 hour program. However, after starting the 200 portion I knew it was a definite that I could do it.

The challenges that were upon me before I started like pain, lack of confidence in myself, and lack of intelligence started to reveal themselves as just fears. I realized that Yoga would help me through all of these things.

Then in March as I was almost done with the first part of three that comprise the 200hr portion I found out I would need to go back in for spinal surgery. At first upon hearing this news it crushed me. It scared me more than I has expected. I reacted in a very exaggerated way to this news (as has been my way or reacting my whole life). This my "Avidaya" or formed life patterns and habits. At this point I realized that this set back was actually here for a reason. It was teaching me the true nature of Yoga. My teacher even pointed this out to me.

She reminded me that going into this surgery I had tools of Patangali's Yoga Sutra that I had gained through my training over the last three months in my classes. That as I would go through this hard time I would use my Yoga.  I would use my breath to get through the pain. I have gained the company of amazing people in this class who have shown me their amazing spirits and voiced their support. This in itself to me is JOY. I am also moved by my Mother's gift of coming out here in this time and am comforted and blessed to have her here with me.

As I await my surgical date I find myself becoming impatient and short tempered and I remind myself of the intention for my current practice. Which is one of compassion and the letting go of anger. I remind myself of the importance of patience.

I see now that this kink in my own plans is an opportunity to put into practice all that I have been studying in my Yoga and practicing on the mat.

Now instead of wishing that this event were over and getting back to my Yoga training again I look forward to seeing if I can put my Yoga to practice. Then when I have done so, getting back to my Yoga Training and with anticipated struggle but with honor to where I will be at that time, continue my journey to some day being able to pass along this amazing science of Yoga to those who may need it as much as I do.

A bit about "Avidaya": 

This is the “accumulated result of our unconscious actions.” We have done things the same for years and perceived things the same as well. The mind becomes dependent on these habits and these actions and perceptions become our “normal”. These habits then cover the mind obscuring clarity of consciousness.

By working on Tapas (keeping ourselves healthy in and out and cleansing) , svadhyaya (self-study) and isvaraprahidhana (quality of action) we can reduce Avidya and “work on ourselves”.  

By, Dragonfly

Sources: The Heart of Yoga by T.K.V. Desikachar

The wiring of my patience and compassion fuses.

Reflect Peace ! 

Chronic Illness and chronic Pain isn't something that everyone has a good understanding of. Friends and family will nob and say “I understand”. Do they really understand that you, yourself, really don't even know yourself after years and years of struggle. Even as your body physically or mentally suffers so does your mind and all it's circuits.

The suffering eats away a bite at a time from your patience fuse, compassion fuse and your agitation limit. You become easily annoyed by things that aren't appropriate and you take it out on the ones you love the most. You don't even recognize yourself some days and all you can do is cry in private about how you miss the pain-free and chronic suffering self. You can only say your sorry so many times to those loved ones before they too are “done with you” and just see that your actions repeat themselves when you are at your worst suffering. As much as you try to control yourself, these short fuses and shortened limits are just built into our design now. The design of ourselves which now includes chronic illness.

For all those in our lives who do understand that we NEVER MEAN to be what we have become in those explosive moments toward you. We are trying with all our might to lengthen, cultivate, and nurture those fuses back to their proper lengths. It just takes time and discovering mechanisms which work for each one of us. Please hang in there with us and know that we need you. We need your HUGS, LOVE, understanding, tolerance, support, and rubs on the back definitely don't hurt.

Healing touch does wonders for us during these hard times. Tiny, butterfly, rubs on my back when I have blown my lid are a gift and I thank you for those.

Reacting peacefully when we have gone off the deep end and are in a crazy state about something ridiculous will set our mind at ease if it is something you are strong enough to do. Reflect peace back at us and don't let us ruin your calm. Be contagious and rub off on us. Let us catch some of what you have to give. So choose to give stability, tranquility and peace in a time which is probably a time of suffering for us. You will see a huge difference in our dynamic and we will be so thankful for the help in rewiring our fuses to be a bit longer and better suited for dealing with our Chronic pain/illness and suffering.

Thank you to all those supporters out there. Those who stand by our sides during moments of un-peace. Who take those moments when we crack and help us through them and don't take the easy road and just walk away. Your hand in ours, whether figuratively or physically is much appreciated and needed.

Thank you !

 I dedicate this post to my loving husband (who mostly gets it right). He, like any other caregiver, could use a bit of advice here and there with how to deal with that person (the person I least know in myself) that comes out every now and then with a very short fuse. 

Success - Just changed at heart.

My father always pushed himself beyond his limits because he was never satisfied with less than the best from himself, and he was never going to be happy than less than the best from “his girls”.

He pushed us to get good grades at ever level of school. There was no question whether we were going to college or not. Whether we had the money or not we were going to earn our way or die trying. It was important to him that his kids had a college education and become “successful” in their lives. He had been the first in his family to have a college degree and he wanted the best for his children.

When I graduated college I pushed myself the same way. I worked myself to the bone taking assistant-ships far away from my home. I drove two hours in and out of the city working everything I could get in the Profession I had chosen. I worked 24 hour days sometimes to come home and sleep 2 days to recover. I received amazing hands-on experience that first year as a Photography/ Applied Media Arts graduate. Then I got my first job with a large Photography Corporation. I worked for them for 5 years. They hours were very long and I drove all over the US photographing family s and children portraits for them. It was amazing experience and long and physical days. I was in amazing shape and still young with endurance I can't imagine having now! After 5 years I got a job with a private Studio and worked with some amazing Talents in the Portrait Photography business. At this time my own Photography business started growing. I was working 6-7 days a week photographing for the Studio on the weekdays and for my business on the weekends doing weddings and other small jobs. My income was good and I has been self supportive for 7 years. I had lived in my own 3 bedroom townhouse for all of this time and enjoyed the freedom of a good income.

One day I found myself driving to work and unable to focus on the road because of a nagging pain in my eyes. By the time I got to work I was almost paralyzed in pain in my eyes, head and left arm. I was in bad shape and ended up in the ER that day. There were many days like this to come. This condition worsened and turned into a Paralyzing nerve/ pain/ migraine condition which was un-namable by 15 specialists in the next 2 years. I continued to try to hold my job for months. I tried my best to hold other small jobs for small clips refusing to give up and file for disability even though I was being advised to. I was now bedridden and being fed through a straw. My husband was my caregiver and it was all he could do to keep it together upon seeing his wife in such a sad state.

In a short time I had lost everything. My career, my fitness success, many of my friends, my drive to live, my drive to succeed and my ability to even do daily functional tasks. It was a shocking life event. In this time I had several near death experiences.

I was affected emotionally by these times. My views on life and what is important changed ! My views on people and their true natures changed as well. I could see trues in this world ,which before these events had been hidden from me. At seven years into my illness I couldn't know what might happen to me in the future. I Felt lost and as though I had no direction. As though anything good for me would surely have been left in my past. My photography, my career , my addiction to the gym and fitness itself. I feel into a severe depression. Time passed by an inch at a time. It was slow and my depression was heavy. I wasn't myself and my decisions were of another spirit all together.

At 9 years a change in location brought a much needed more away from bad influences and a turn into a better environment over all. My mind started to clear a bit and all of the sudden I felt inspired again. I came to believe over a long time that these trials of the human spirit and strength of the human machine, are meant to mold us for some thing.

I believe that when Aromatherapy found me it was in stages throughout my illness. Smells found me First in a destructive way during my worst migraines to date. That feeling you get when a migraine is just starting and every smell is strong and awful. It sends you reeling over the edge into migraine hell. Then I discovered Essential Oils through a Chinese Acupuncturist In Pennsylvania. I don't remember the first time I bought Peppermint Essential oil but it changed my life with its healing powers every since. My second friend of pain was Frankincense. Thank goodness.

As I walk my path with this new education into herbal medicine I still am a chronic pain sufferer. I still have horrible days and still get paralyzing pain. I am reminded that my body is still completely right inside this exterior which is trying to move forward with having a “normal life” again. However, I am in a new place mentally and take time to listen to what my body is telling me. I take much more time with myself than I did before. I am quite more often in order to know what I need.

I also am geared toward a goal which is so much more different than the photography which I was once dedicated to. My goals include trying to help others in ways which I needed help and still need help today. This puts me in a unique position and perspective to understand what other peoples bodies might be saying to them. Maybe they don't hear it and maybe I have learned a way of listening which they could benefit from. I do hope so.

I am still that hard-working,dedicated, and pushy girl that I always was and still strive for success it is just that the success I am seeking isn't solely based on the number of dollar bills I am gathering. I Feel successful when someone tells me I am helping them. I Feel successful when the blend I have made is amazing and therapeutically active. I also feel successful when I am eating right, in good shape, treating my body with respect and surrounding myself with good people and healthy things.

I owe my point of view, my success (ALL OF IT) to my husband. He is a man I look up to, respect , and love so very much. He has given me so much all of these years and without his love and support I couldn't have all that I do today in terms of success.

My hierarchy of the definition of success has changed.....

SUCCESS:

• When someone tells me I have helped them.
• A blend is exactly what I meant it to be or better !
• I am feeling good because I am honoring my body.
• I am meditating and keeping myself mentally healthy daily.
• My marriage is healthy and happy
• My friends are part of my life and we are keeping in touch.
• I am earning at least some money to help contribute (not yet but I have hope)

Giving to ourselves the gift of , EXTRA TIME !

Making decisions... 

When I come upon a decision to be made it is a slight bit different than it used to be. I remember a time when there wasn't much to it. 
Do I want to go there, do this, eat this? 

The questions were fairly easily answered through the day and there was very little energy expended or stress put into it all. However, when you are chronically ill or dealing with a very undependable condition in your life there are things that could change at any moment. When I ask myself to make these decisions which at one time seamed simple I become fearful, worried, and I tend to over think them in many ways. 

A good example is traveling. I have an amazing opportunity presenting itself to me right now to go to a seminar and learn more in my trade. It involves much travel by air and time away from home. Because my body doesn't always cooperate and I suffer migraines and severe pain without warning my mind immediately is thinking out the possible scenarios that might take place if I consider going to this event. I think about all the special items I must take a long which involve special diets I must maintain while away, medicines and vitamins which will help me to stay healthy while there. It will include many different things which I will want to make sure to pack and I will start to worry that I might forget something which in the end will be missed. 

I have traveled much in my past. Especially for someone who has a chronic illness. However, this trip means so much to me I would hate for it to be something I would fly far from home to enjoy and pay much money to attend and get all the way there and find that my body isn't playing along. Those of you will chronic conditions know exactly what it feels like to want to make plans and to hold back due to a condition that you have which is unpredictable. 

I find in my life many decisions I am coming upon which are like this. They are not so easily made because of my own body which has become very unpredictable. I remind myself that it is okay to take things slowly and one small step at a time and not to rush ahead. I have small talks with myself and tell myself over again that I do not have to be one in the crowd and take many classes at a time as "they do" in order to get furthering education. I get very excited to move forward with my life. I get sad sometimes that I must pace myself due to "limitations" I now have. However, it is best I remember these limitations and embrace that they are now part of me than to RUSH ahead and regret that I have done so by needing to recover with a massive migraine later for days upon days of suffering. 

Today I am going to take this moment to remind myself  and others out there like me: 
Even though we stress over these types of decisions because there are things about our conditions which are unpredictable .....we must also remember that we CAN still do the things we love and want. By planning ahead and taking our time... We can make a check list to remind ourselves of the things we must take with us on our outings. That way we feel more "put together". 

As much as we want to "run with the crowd" we are special in many ways. We have a perspective that many don't have and we have strength in us that has been finely tuned to deal with our suffering. So, this --added time-- we are going to allow ourselves to prepare to make these decisions, is NOTHING compared to the suffering we have endured. It can be easy if we let it. 

We are going to GIVE ourselves this extra time.....so that we can still HAVE the trips we want. Hopefully we can alleviate some of the stress we associate with making decisions in our lives, due to the uncertainty that our bodies have added in.