A Balancing Act

A friend asked me this week what I worry most about from my disease. Is it the anaphylaxis? I explained it was sliding so far off my tight rope that I will not be able to get back up.  I suppose this should come as no surprise having literally watched my Mom's slide to her death over a matter of weeks proving that sheer will is not enough to save your life - your body must also meet you halfway.  Of course, it is the same body that also sustains a beating each day from the unrelenting rare diseases I live with.  I have no reserve- my body is at its max at all times - but I still push it or I could not live outside my bedroom.  I medicate heavily and try to keep moving knowing it has to come along at least until it won't anymore.  But when does my balancing act end? When will I fall?  And when I do, will they have learned enough to get me back up?

I do not daily worry about dying but I worry about losing the quality of my life, of the ability to keep pushing myself, and in doing so, finding joy.

Perhaps it is for this reason that more and more everything feels like it matters and why this week I tried so hard to even in a pandemic find my own safe way to slow down, spend time with those closest to me and make new memories. Tomorrow is not a guarantee. If anything our current reality is reminding us all of this everyday.  But for rare disease patients it is always true.

I have a very dear friend and fellow warrior whose body is failing her right now - in every possible way - and as her tight rope is slowly fraying our conversations are open and honest about the need to make our time on this earth count. To fill our days with the very most important things to us because in a moment it can end.

And while I know this is all any of us can do it is still also hard not to be angry and frustrated that anyone has to live this way- without treatments and cures and physicians who know what to do, without having to worry if we can hold on long enough for science to catch up. Sadly, I know lives will continue to be lost too soon, many already have, unable to keep up their balancing act. So as I work hard at healing and fighting my diseases to gain back control of my body I also am mindful to fill my days with things and people I love most.

This past week was spent with the ocean and family- finding small adventures and being present and allowing my world to stand still. As I sat watching the waves of the ocean go in and out, always in motion, I took deep breaths trying to find my center. The magnitude of the ocean’s presence is powerful and reminded me we are all part of something bigger than any of us understand. But as the sound of the waves and smell of the salt water engulfed me I felt tremendous gratitude to witness the beauty around me and most of all for the gift of another day- on my tightrope and all.