Not all that long ago, I seem to have had an epiphany. That, or it’s a really productive midlife crisis, but either way I’m going to make the most of it. I started this particular Facebook page with an important purpose in mind, and I am really happy to say that it is achieving what I intended and more. What I did not expect was to be so personally affected.
I have one dear friend to thank in part. I woke up one morning and checked my newsfeed as usual, and found something that grabbed my attention more than anything has in a long time. I sat watching a video of an inspirational athlete that I had followed for a long time and then for various stupid life distractions allowed his work to fall off my radar. For YEARS. During this time my own life was in a downhill slide of despair health-wise and everything else you can imagine, so I’m not going to say that nothing significant caused my gear-shift. I will however say that I now realize just how easy it is to let go of things that are vital to your very core, and keep you motivated through life, and it is a mistake that too many make. I became so despondent over the challenges and pain I faced that I forgot to look to the very people that could have been inspirational for getting back on my feet. Complacency crept in. Mediocrity and complacency took over. I have come to the conclusion that complacency kills. It eats you up.
I’ve been happily posting videos of challenged athletes, and dancers, and motivational speakers. These are people with everything from congenital disorders to chronic illness, and injuries, and more. Some have Lupus, like myself, and haven’t let it define them but rather drive them to do more. For a long time I bought the lie that most of us are offered, and that is one of limitations and an expiration date. It took me a long time to shake that sense that I was on a timer, but the framework of what I could expect to do was even harder to shake. As I added more and more videos and stories to my page, I began to realize just how tremendous some of the accomplishments were that I was viewing.. and how very close I am to being able to do what I used to – AND MORE. I realized that the only thing holding me back was me. I was too afraid of the what ifs. While you sit and what if yourself into a corner, life is passing by and you’re missing it. I lost a decade to this thing already. I won’t be giving up anymore to it.
So the newest addition to videos and stories I’ve been posting is also about athletes that had terrible accidents and damage, but recovered. That is just as significant to me as someone else that has a chronic, debilitating, or catastrophic illness like I face. Rehab is rehab, and it’s what you make of it. Around the beginning of 2011 I began having more pronounced issues with my left shoulder, which had an AC separation when I was 17 years old and had given me a lifetime of aggravation. Something new was wrong though, and I couldn’t get it to ease up even with all the usual measures. Rest, ice, muscle relaxer.. nothing helped and it was getting worse. I was sent to an excellent Ortho and found out that I had bone spurs and degeneration of the normal cushion where it belongs in there. The bottom line was it would only progress, and if not repaired it would tear my rotator cuff. Insurance being what it is, I took the cortisone injection first to satisfy them, and in 2 months it wore off. They wouldn’t give another one till 3 had passed, so I said well we are done with THAT so let’s fix it for real. On February 3, National Wear Red Day for heart disease awareness, I went in for surgery on my left shoulder – showed up happily wearing a red hat, as I do have a heart condition myself. Timing is everything, because I was told in recovery that indeed the rotator cuff had started to tear but was debrided as it was minor. Fortune smiled because a tear is a much more serious situation and harder recovery from the repair, and that surgery has a failure rate of significance. Within a short time, my right shoulder decided it was time to announce the same problem – impingement syndrome AGAIN. I knew. We had suspected it could happen anyway. So, I pushed hard in PT and got full range of motion, while working on my low back in a separate set of PT work at the same time (I was busy), so we could move forward. One cortisone injection again, and done. In August, just six months later, I had the same repair done on the right side. Clavicular resection and subacromial decompression with minor RC debridement (he said it was like a carbon copy of the left one). One month later, I lost my health insurance. Timing is everything. I was left to finish PT unassisted. I slowed down.
I’ve been just maintaining. Lupus is a connective tissue disease, to be clear. Recovery from any cutting, or injury, is a bigger challenge. Add to it fatigue, and joint pain, and all the other fun add-ons that come with the disease, and then remove my PT support, and I was crawling by comparison to my first surgery. I found myself on the verge of depression again for a while. Several months ago, I started walking again – what I had done when I found out about my heart. I decided I had let it go long enough. Picking up those weights though… hmmm. It just wasn’t happening as often as it should. Here I can thank another friend for showing me what dedication to a goal is about. She came into my life in the middle of her own profound journey, and was so impressively immersed in her intent that I couldn’t help but want to do better myself. I looked at the changes I have made over the last decade to what I eat and realized that as much as I’ve done, I can do even better. Then I re-examined what I wasn’t doing physically. I picked up my weights again. I got out my resistance bands again. I got serious.
Serious actions require a gut level dedication though. I went through the motions and when I hit bad days, I stalled. Earlier this year I had been through a devastating emotional crisis and it was weighing me down. I’ve spoken recently about finally being “unstuck”, and that is the conclusion of this tale. It might seem silly that watching a few videos of athletes doing something I’m not in condition for considering anymore is meaningful, but it is. It reminded me that limitations are self-imposed, because these are not people that have gone through life unscathed. They have all the scars to prove just how much of a beating you take when you decide to live life to it’s fullest. I was never at their level, but I had the desire to be when I was younger. I also have my own injuries as evidence of the many chances I took, and the things I reached for. I didn’t end up this torn up just because of Lupus. Lupus takes a real joy in attacking those damaged areas at time, I will tell you that. Somewhere in all of this, fear became more prominent than joy in my life and I lost myself. I lost myself to my REACTION to pain, and to toxic people, and to labels, and to inappropriate fear. Watching other people do something with passion, and abandon, and then seeing an expression of absolute joy and a natural high on their faces reminded me of the things in life that I love so deeply. I remembered what it was like to feel that way and suddenly wanted it back. It was as simple as making the decision. I’m there.
My mother is an artist as well (she paints). During one of the annual art shows on Catalina Island that she participated in for 13 years, she was visiting with a friend that lives on the island and has a gallery, and had a very interesting conversation. She as admiring this woman’s imagination – her ability to create something on canvas that is unseen with natural eyes. Mom paints from source photos and what she sees physically, and claims that she does not have the imagination to create from nothing. She told this woman that she wished that she could do that too. She paused and looked at my mother with a serious expression, and asked her, “So, what’s stopping you?” I’ve been told that story more than once. I found it meaningful, but never so much as I do today. In my heart I have turned around 180 from where I was last week. I was going through the motions on some level, but I was just not THERE yet. I thought about the artist’s words again. “What’s stopping you?” The answer now is… nothing.
Dina, Sunny, I love you both for the roles you have played in supporting me moving forward and breaking out of limitations. Julie Jo, so ever-present and my best cheering section for 3 years now, I swear. I love how much you love what I do, and how you always look forward so much to the sharing of it. You ladies are incredible. (You’re not the only ones, but you get a special nod today.) 😉