Show Us Your Hands! Annual Report: Recalibration: Creating a Balance

SUYH-Logo-128x128To celebrate the first anniversary of Show Us Your Hands! as a non-profit, the Board of Directors is writing a series of blog posts about the past year. Each of us writes about a different topic, relevant to us as individuals, to the organization and to the community. We welcome your comments and hope you’ll share these posts with others to continue the conversation. Today, Cathy Kramer, Director of Community Programs, recounts our recalibration as a team and an organization and for herself, and her personal life.

I am the mom to a very passionate 15 year old daughter who has always had the amazing gift of living in the moment. I have vivid memories of her stopping on winter walks to pick up snow and not just eat it, but experience it. I could sit all day and watch her with friends because I know in her mind that she is thinking of nothing else but that moment which she is in. Times like this I want to stop and take it all in. I want to experience life as my daughter. These are the good moments of living in the moment. Unfortunately, there are also frustrating moments such as when deadlines aren’t met or planning ahead didn’t happen and she has to study for three big tests in one evening.

This school year I am spending a lot of time helping my daughter to prioritize her schedule. I make weekly calendars that she rolls her eyes at, but give both of us a view of the week so that we can think ahead. By thinking ahead, she is able to accomplish the things that have to be done and also plan ahead for the things she wants to do, which then makes living in the moment that much easier for mom. Planning ahead, prioritizing, and reprioritizing is a theme we are also working on at Show Us Your Hands! As Director Lene Andersen points out in Arthritis and Employment: Show Us Your Hands! the directors of Show Us Your Hands! each deal with inflammatory arthritis, stress, and workload in different ways and at different levels.

Many times we have had to stop and reprioritize our goals and projects while taking time to understand how each of us handles stress and life. Sometimes it has been frustrating to put community projects on the back burner so that we can stop and take a second or third look at our overall goals, but it has also given us lessons that each one of us is taking back to our personal lives. We have found that deadlines are necessary, so that as with my daughter, we can look ahead and accomplish our goals. Many times though, we choose to extend those deadlines as one or two of us might be dealing with life issues. We are constantly coming up with inventive ways of opening up the communication between the five of us who communicate exclusively through emails and Google Hangout as we live on three different continents. It is a constant theme to find more effective ways to distribute the workload and stay organized. We want to make this organization one that focuses on the physical and mental health of our team, so that we can better serve the community while being kind to our minds and bodies. We are constantly reprioritizing our goals so that in the end we not only provide community projects of substance, but also give ourselves as Directors time to live in the moment of our own lives.

As Show Us Your Hands! takes the necessary time to focus on providing a positive message to the community about inflammatory arthritis, I find this simple exercise helps me get in touch with what matters most to me in regards to my personal life and as a Director of Show Us Your Hands!. I stop, close my eyes, and ask myself, “What do you want? What do you need?” Taking just a few short minutes to focus back on my personal needs helps me to prioritize what I am able to do as a team member. My wants and needs are always changing which is why taking a few minutes and refocusing always brings me back to accomplishing my goals.

How do you prioritize your goals?

Cathy-Kramer

Cathy Kramer
Show Us Your Hands! Director of Community Programs
December 12, 2013

Show Us Your Hands! is a nonprofit charity organization that aims to unite and inspire people who live with inflammatory arthritis. For more information, please visit www.showusyourhands.org.

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Freefall

balloonsAs much as I would like to think that I am prepared for every downturn that living with rheumatoid arthritis might have in store for me, the truth is: I’m not. And even though I knew that the winter conditions of the last two days were having a profound effect on my decreased mobility and increased pain levels, I still wasn’t prepared for the sudden tailspin (physical and emotional) that I entered into right around midday yesterday.

(Yes, we are moving towards summer down here in the southern hemisphere…but it’s also the start of the annual rainy season up here on top of the Andes Mountains, so when you combine wet and cold conditions with the extremely high altitude at which I live, summer ends up becoming, well, just another winter!)

One minute I thought I was just fine; the next minute I had no clue what was going on. I laid there, wondering to myself: what exactly is a person supposed to “grab on” to, when it feels like there is nothing to grab on to. Even though a more objective response to that question would show that there is indeed a lot to grab on to, the fact that my body just went from moving ‘normally’ to not being able to move at all–all in a matter of just a few short minutes–is enough (I hope) to explain why I might not necessarily be using the most logical thinking (to say the least) during such a crisis moment.

Less than a week ago, I had already started my bi-annual psych out–the mental pep-rally that I go through at the start of each (actual) winter and (summer) winter, when I start telling myself that even though I am in store for quite a ride during the next few months, everything will will be okay–all I have to do is hold on tight. Really tight!

But then my freefall started, and it felt like there was nothing to hold on to. I couldn’t even muster the strength to respond to my husband’s questions of concern: what did I need? We both knew that I was in for a big one, and that the only answer was for me to ride through it, best I could. It is during such moments, I think, when I realize that even the person sitting on the bed next to me can’t really do anything to make me feel better, when things become *really* scary. It’s like you know you have help, but you also know that you’re on your own.

As I experienced an agony unlike anything I had ever felt before (my entire spinal column was, for the first time ever, completely inflamed…and even though I was in a position that was not helping my back pain, I was not able to move into a different position) I started to tell myself that if there was nothing to grab on to, all I had to do was float…even if I was floating in some of the worst pain I’ve ever experienced.

Better yet, I told myself, why not fly? I’ve never shared as much, but whenever I lose complete use of my body and limbs, when I am unable to even change the music that is being piped into my earphones, I often start to fly, up in my head. I visualize myself floating through the clouds with a huge smile on my face, and I feel great, even though a little corner of my mind still knows that at the exact moment, my body is indeed experiencing the unimaginable.

Tears started to flow, as I remembered that just five days ago, I flew for real. When I floated through the sky while hanging from a paraglider this past Friday, I remember telling myself: next time you are unable to move your body, this is the place, this is the memory, that you need to come back to.

And just like that, everything started to make sense. I knew what was going on. I knew I was going to be okay. I continued to fly in my head for a little longer than I might have wished, but eventually, I came in for a safe landing.

(Thanks to everyone who supported me when I reached out for help yesterday–you all know who you are!)

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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Show Us Your Hands! Annual Report: Empowerment and Pride

SUYH-Logo-128x128To celebrate the first anniversary of Show Us Your Hands! as a non-profit, the Board of Directors is writing a series of blog posts about the past year. Each of us writes about a different topic, relevant to us as individuals, to the organization and to the community. We welcome your comments and hope you’ll share these posts with others to continue the conversation. In the first post, Jessica Murphy, Director of Communications, writes about empowerment and pride (part of our vision and values) and how acceptance has influenced her own journey towards acceptance.

In our first year as a non profit, defining our core organisational vision and values has been an important step towards developing our culture and objectives. We aimed to create a vision that captured the spirit and purpose of our organisation. Pride and Empowerment are central themes in our vision, and for me personally they are at the very core of my journey with inflammatory arthritis. We want people to see the positive side of their disease, feel proud of their bodies. Encouraging people to feel empowered and take ownership of their disease is very important. These themes help us refocus as an organisation and ensure that everything we do has a purpose that supports these aims. Our vision and values guide our decision making and ground us.

Recently I defined my personal values for the first time. This was a challenging but liberating process; it helps me realise the importance of integrity, acceptance and reflection in my own life (3 of my core values). As a team we are getting better at taking a step back to check that our actions reflect our goals, but I realised I rarely do this in my personal life. Through Show Us Your Hands! I have developed a stronger sense of what is important to me, and learnt how through clearly defining my core values I ensure I live by them every day.

Embracing acceptance has empowered me; it has given me the freedom to come to terms with my disease and focus my energy on things that are within my control, instead of raging against them. I no longer ‘suffer from’ arthritis, I ‘live with’ arthritis. I call it ‘my arthritis’. Because it is mine! In a funny way, I love it. I know I would not be the person I am today without it. My arthritis has given me the gift of patience. I am accepting of both my own limitations and am not angry with myself if I can’t do things. I am more accepting of others for who they are (and not who I want them to be). I am more reflective, and consder my actions more carefully. I am also more self aware, as I have a lot of time to think about how others actions affect me (for example people kicking my walking stick on the tube). This in turn helps me consider how my actions affect others. So I am all round a better person! And for that reason, if I had the choice, I would choose to have arthritis. It is a terrible yet wonderful disease, and my life without it would be less rich.

Looking ahead, I am excited about what 2014 will bring. Our organisation is starting to take off. I am looking forward to continue to work with my fabulous Directors, and raise the profile of Show Us Your Hands!, empowering and taking pride in our bodies.

Jessica
Jessica Murphy
Show Us Your Hands! Director of Communication
December 11, 2013

Show Us Your Hands! is a nonprofit charity organization that aims to unite and inspire people who live with inflammatory arthritis. For more information, please visit www.showusyourhands.org.

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Sky High

When I saw this movie (The Intouchables paragliding scene) in February of this year, I was experiencing daily extended episodes of complete body paralysis. I told myself that if I ever regained my mobility, that I would go out and paraglide too.

Well, I did it! Today I went soaring above the Andes!

RA Guy Flying Above the Andes

 
Thanks to everyone who has supported me during my recent journey back to wellness.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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Name My Cane!

Cane

 

Thanks to the hundreds of people who suggested a name for my cane. (You can see all of the wonderful ideas here and here.) I have created a short list of my favorites, and would like you–my friends and supporters–to make the final decision!

Name-My-Cane-Results

Update: The winning name is Eileen-as in I lean! Thanks to everyone who took part in the Name My Cane contest–it was a lot of fun, and I now have a great story to share whenever someone asks why my cane is named Eileen.

Don’t forget, when it comes to stuff like having to use canes, crutches, or any other assistive device, be sure to have as much fun as you possible can!

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