Written by Shannon Leidig for the RSDSA blog.
“You have to be there, you have to
Without you I drown in the deep
Too far, too far from land
The waters drag me down
I reach for your hand“
From the Musical Kristina
I remember several years ago driving to my weekly massage appointment, listening to the Broadway channel on Sirius XM, when all of the sudden, out of the blue, came a song that I had never heard, from a musical I had never heard of. I remember driving and sobbing/crying as this song sucker punched me in ways that I had thought about over my 26.5-year journey with RSD, but could not quite find the words. This song did it. I keep my radio on the Broadway channel and I kept thinking I would hear this song, but it never played when I wanted it to (that was the key in that I wanted it too). Well, during a very difficult, dark, and trying time, I turned on the radio. What did I hear? You got it- this song! Once again, I remember sobbing thinking about so many things, relating to not only RSD, but to relationships and life in general. It is the last two lines in particular that really hit me: “The waters drag me down; I reach for your hand.”
This musical details a family on a journey from Sweden to America during the mid-19th century. Detailing a family’s poverty-driven migration from Sweden to America in the mid-19th century, Kristina sings this gut wrenching song, “You Have to Be There,” as she thinks of all the things that have gone wrong in her life- leaving home, losing her child, and the love of her husband. She desperately prays to God, not knowing what to do if He is not real. But again that line, “I reach for your hand…” How many times have we reached out our hands, sometimes others push and shove it away, wanting NOTHING to do with us? BUT, there are those who are so central to our lives- family and friends who grab on for dear life and walk this journey with us. Those are the folks I am proud to have in my life to hold my hand, walking through the good, the bad, the ugly, and the dark, yet the rainbow that always appears after a heavy rain and sunshine appear at the same time.
I have been thinking about this a lot lately – as several people have said: “Oh, I am going out for the holiday,” “I am going to ride this roller coaster, “I am going to hit the sun and surf,” et cetera, and then they ask me: “What are you going to do for fun?” Well, I’m not sure, but I know that whatever I do, I will be surrounded by people who will grab hold of my hand and carry me should I fall.
Once again, I was reminded of this at my doctor’s office today as I was having treatment. My nurse and I were talking and reflecting, and I mentioned to her that I would rather have a small group of great friends, who I know will be there for me no matter what and accept me, than to have tons of acquaintances who are there for convenience. That may sound harsh, BUT I have learned a lot about relationships in dealing with RSD for this length of time.
We struggle, just like so many others in life. We have obstacles. Ours are just harder to deal with, BUT if we have those folks in our life to help us, it makes things a little easier (and I for one am thankful for that). We grieve, we long for what we have lost, we seek answers and help wherever we can get it, we struggle to “fit in,” yet where does that get us? I know it landed me in a lot more pain.
I was diagnosed with this at the age of 19, as a freshman in college. This is a time in life when friendships are formed because (face it) we are with our college folk more than we are with our own families. Things were fine with my group of friends prior to RSD, but after, not quite. My friends did not understand nor, did they want too. Maybe they tried, but the pain world was so foreign to them they just could not wrap their minds around that.
Over the course of the years, friendships came and went, as some could accept what was wrong while others couldn’t. Heck, even my family had a difficult time, as RSD not only changed my life, but the lives of my family. Family as well as friends had to deal with the reality of planning things, whether it be vacations, shopping trips, movies, walks, get-togethers, outings, trips to NYC to catch shows that [could be planned ahead of time] but a lot depended on whether or not my body could and would cooperate. My mind would say: “Yes let’s do it,” but my body would respond, “Um not so much!” That was hard for those in my life to accept, and it was much harder on me. I felt I let them down. Over the years, they understood more, but it was still very difficult. We learned that sometimes it paid to have Plan A, Plan B and sometimes even Plan Z – just to be on the safe side.
Family to me is more than just being related by blood. I know that I consider my circle of friends as family, as they are there no matter what and will be. We have weathered many storms over the course of our lives, but NO matter what, we have been there for each other. They have stretched out their hands and I have grabbed hold and the reverse as well. I reached out my hand and they grabbed hold and held me up. They have told me and shared with me that it is okay to be me; they will accept me on my good days and the days that are not so good, days in which I do not know if I can make it, or days when I have wonderful news to share with them, or if I just need a cry or hug. They are family to me I am so thankful. This blog is dedicated to those who are in my life who have done just that! Thank you for grabbing hold and carrying me through the storms of life.
“You have to be there, you have to
Without you I drown in the deep
Too far, too far from land
The waters drag me down
I reach for your hand”
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