I’ll Take You There

Disclosure: this is a deeply personal post and one that is important to share with whatever audience reads this humble blog about music and quilting. It is still about quilting and music, but also about my health and the impetus for this quilt. This post is less about the “how” and more about the “why” of the above creation. As you read, keep in mind that although I do believe hyperbole is the best thing ever (see what I just did?), there are words used in this post that may appear dramatic and exaggerative, but are in fact absolutely literal.

Each of us has dates embedded in our personal history from important milestones to anniversaries to historical events. One day in February 2022 is forever seared into my history because it is the date of my hysterectomy. On this date, my body went through a trauma in order to get my health back. This date also represents a before and an after.

Let’s start with the before. For over 30 years my uterus, herein referred to as Gertrude, was a dominant force in my life. All attempts to address this were consistently met with dismissal from the plethora of physicians and practitioners I consulted. I always left these appointments feeling as if I was an annoyance for deigning to mention my cycle. I was met with advice like “you should just eat meat”, or the most egregious quack proposal “try and get pregnant, maybe it will fix something in you”. No effing way! My intuition told me that this was not normal. However when your concerns are met with skepticism and judgement, you learn to manage/suffer on your own.

Fast forward to nine years ago when I was diagnosed with advanced endometriosis (which affects 1 in 10 women BTW) after the surgical removal of a citrus sized ovarian cyst. Finally (!!!) there was a name for this curse and with a definitive diagnosis, my misery was suddenly legitimized in the medical community. Thus began many years of treatments, surgeries and procedures to manage a disease that while not lethal, sure as hell makes you feel awful. As time wore on, I made peace with the endo; it was a part of me that I had no choice but to accept. I want to clarify that while there was an acceptance of the disease, there was also a continual pursuit of better health. I personally do not relate to the idea of being an illness “warrior”, I simply live my life as best able.

My life bobbed on with the disease and Gertrude’s outsized role until late 2020 when I started to have very strange symptoms including nosebleeds and a metallic taste in my mouth. Then came a cycle so heavy, I felt as if I were hemorrhaging, followed by a fatigue so profound, I physically hurt — a true nightmare. My bloodwork showed that my platelet level had crashed. Platelets are responsible for helping blood clot and optimal levels are 150 – 450 (thousand); mine registered at a level called “dreadful” by a physician. There was something majorly wrong. And the timing of this was smack in the middle of the early pandemic so not only was I dealing with a crisis, but so was the world.

I was diagnosed with Immune Thrombocytopenia (ITP), an autoimmune disease that causes your body to attack its platelets and therefore causes very unpleasant bleeding problems. This discovery really came as a shock both physically and emotionally. I am a person who takes her health very seriously, so how could this body that I feed with such intention, this body that I love so dearly attack itself? What about all of that spinach? Or all of the “I love yous” to myself? Autoimmune diseases are so complex because you cannot blame some pathogen, some other thing. In simple terms your body is attacking your body, and that was a very hard thing for me to accept.

Post ITP diagnosis, my life (and consequently my husband’s) was packed with constant tests, doctors appointments, trials of pharmaceutical interventions, and oh you know, the pandemic’s wallop of the health care system. It was through my own sheer determination and research that I found this resolution. I knew that a hysterectomy was inevitable, but it was so complex for me to find the right surgical team (including hematologists) and work within the parameters of a battered hospital system. Just a few days after my 44th birthday, I was struck down once again by the horror show and its aftermath when serendipitously, the surgical team called to tell me there was a cancellation and I was scheduled for surgery in 9 days. Those days were a whirlwind filled with more appointments, more tests and so many logistics. After all I had been through, I was so busy that I had no time or energy to worry.

Thank you for your patience as I distilled all of this history into something (hopefully) digestible to you as a reader. The immediate after Gertrude’s eviction was a total blur of sleep and recovery. In my imagined, and frankly delusional, vision of recovery, I envisioned a month in bed streaming radio, sipping on herbal tea and hand quilting and/or knitting. The reality of my recovery was something very different and far less idyllic. I realized very quickly that the only thing I could do was heal. As someone who is always doing something, every ounce of everything went to healing.

This mini quilt was made for my surgeon whose expertise and care cannot be quantified. After a very long search, I knew at my first appointment that I was in the right hands with her. Therefore this quilt was made entirely by my hands — hand dyed, hand pieced, hand cut (no scissors, no measurements) and hand quilted. No subtlety here folks! This is my first hand pieced quilt and it is very different from hand quilting. My initial block did not stay together as my stitches were too loose and I did not have a good anchor for my thread. Once I discovered that a couple of initial back stitches at the beginning and end secured the thread, my piecing became more stable. I made the majority of this quilt while propped up in either bed or on the couch, a heating pad on my back and one on my abdomen, a large quilt on my body, a bag of scraps by my side. I finished the last of the quilted rows outside on my first (short, slow) hike while my husband fished — exactly one month minus a day after my surgery. After I finished the quilt and saw the photographs in the great outdoors, the word HEAL immediately jumped out in the design. Whoa, that was completely unexpected!

While recovering, I made a distinct point to limit my intake of anything heavy and negative. This meant that I limited my ingestion of news, read fluffier books and only watched things that brought me peace. My time post hysterectomy was all about calm and comfort. One gem I stumbled upon in my quest for positive entertainment was a Mavis Staples documentary appropriately titled Mavis!. Since this movie, I’ve been seeking out albums by The Staples Singers and Mavis’ solo work. She is incredibly talented and so inspiring. She is positive and comforting. She makes healing music. The world needs more Mavis!

Since I am mere single digit weeks into my recovery, I still don’t know what life post-Gertrude will be like. A hysterectomy is not a cure for either of what ails me. What this surgery has given me is life without a period, which since the advent of the bleeding disorder has been very scary and debilitating. There is an immense weight that has been lifted from not only me, but also those closest to me. I am super positive about the future and the opportunity to manage what I have. It is tempting to make lots of goals and plans, which I am resisting to let my body guide me in the next direction.

Thank you for reading, this was not easy for me to write or share. Lest you feel the urge to applaud my courage in putting this very personal medical history out on the scary internet, please understand that hitting publish on this post required liquid courage (in the form of a Washington Pinot Gris) and some seriously deep breaths. I made this quilt as a thank you gift and also as a way to process my thoughts around a big life event. I published this because it may help someone else. If you take anything away from what I’ve shared, I hope it is that it is you can live a beautiful and healthy life even with illness. Despite our best efforts and all the spinach and all of the love, at some point our lives will be impacted by an illness or injury. Just a reminder that if your intuition is saying something ain’t right, find the people out there that are compassionate because they do exist. Quilts and music remain the best medicines. Oh and listen to more Mavis, too.

Albums listened to: The Staples Singers Best of the Staples Singers, Be Altitude: Respect, Let’s Do It Again; Mavis Staples You Are Not Alone.