After years of very random illnesses, I was physically falling apart.
I would be lethargic and exhausted. Had memory loss, confusion, rashes on my face and fevers. I developed endocarditis following a surgery to my hand. I have had both knees redone (ACL, MCL and ACL) not to mention my torn shoulder and the steroid injections. Subsequently I stopped all sports and pretty much all activity.
Finally, I was diagnosed with Lupus. I have SLE Lupus and that has manifested into Lupus Nephritis which affects my kidney function. I am maintaining through medication and chemotherapy. I have turned a corner to a positive place, finally, even though I’ve lost my hair. As if this wasn’t enough, at some point during all of this turmoil a member of my family was informed by my soon to be ex-husband that he “didn’t sign up for sick.” Though she was devastated to hear his neglectful and uncaring tinge, she didn’t tell me this for a very long time.
The day my ex left me in a state of shock, he went straight to visit my mother. He walked to her door, knocked and told her in her doorway that he filed for divorce. My mother was dumbfounded and has said she’s grateful for meditation or her second degree black belt training may have taken over. Remaining calm she asked why. He said in a matter of fact way that he needed his own time and happiness. He said goodbye and left for the airport. The entire conversation was minutes long.
He needed to have a healthy wife. He didn’t want someone who couldn’t ski because her knees were just replaced or who had to rest because of exhaustion. He felt it was unfair to him to be expected to live his life with that and he chose to not deal with it. My lupus caused me to need extra sleep, we hired cleaning ladies and he was annoyed with the expense. I stayed with our children and focused on them. I was not contributing to the household finally so I was a burden. I could understand this if we had financial problems but that was not a concern. He wanted someone he could introduce as his wife the attorney, not his wife who “played with a camera and was sick with lupus.”
The greatest thing about losing your way is the adventure of finding a new path.
When I started a life with my husband, we had big dreams. I did. He did. Dreams and hopes of future: kids, family, life. We have our family, our beautiful and amazing children. We
have had each other. I always saw the road in front of me. One that was well-marked and easily identifiable. I knew every year we attended the same charity auction, and would have Thanksgiving with his mother.
The road led in so many directions. On the right, our children would grow up, go to college and embark on wonderful lives of their on. Then on the left, we would have our own time, again. I never saw illness and divorce was not a part of the legend. That was my big picture. A road map of my future. My map is skewed now. As if someone spilled a cup of coffee on the center and it got stained and torn. The map is still there, but it is undefinable. I wonder if there is an app for my phone for that. Lost my way in a divorce, please guide me to the right path.
I need a new map. I also need a compass because I realize that not only have I lost part of myself but now my direction has shifted. Every relationship involves give and take. Some people take up a hobby to spend more time with a partner while others give up doing things they love to focus on the other person. Both of these ways of thinking are incorrect.
You can take up a hobby to spend time with a partner, but ask yourself: is the other person doing the same for me? In my experience, this was not the case. I have spent years playing sports or taking up something that my husband does in the hope of spending more time together. It never worked that way. I wanted to play golf with him, he said take lessons. I took lessons and he said I wasn’t good enough—his game will be slowed down. He isn’t Tiger Woods for goodness sake, he plays as a hobby. It was just never enough. I would become very upset and hurt by his rejection, realizing that his wanting to keep our hobbies separate is a disservice to our marriage. We had the opportunity to have a lot of laughter, it just wasn’t seized.
I enjoy art. I paint. I photograph everything. There is emotion in art and I appreciate that. Had we ever been to a museum together? Once. The Museum Ludwig in Cologne, Germany. This is a great museum but it houses modern art and surrealism. He complained about the waste of canvas. I wanted to see the Wallraf-Richartz-Museum while in Cologne, but there was not enough time. The question I have always wondered is why wasn’t there enough time, we were on vacation? We had no timetable, a car, and weeks exploring Germany. Don’t get me started on the Louvre. We were in Paris and he wouldn’t even go to the Louvre with me. Why? Been there done that, that was his response. I was supposed to go with him and follow his direction. I could spend weeks in the Louvre. Weeks. Once is not enough.
I am taking moments everyday to step back into myself. One step at a time. Today, I am a member at the Denver Art Museum. I stopped going a long time ago, because I wanted to share it with my husband and I was saddened every time I went alone. Now, though, I realize I can share my love of art with my children, most importantly, I truly enjoy it for myself. I go with friends. I go alone. I just go.
Don’t get me wrong, I also owe a great debt of gratitude to my husband. He taught me that I am strong by forcing me into adversity. He taught me how to see the truth by being dishonest with me. He taught me to value myself by putting no amount of care or value into my health. I am a better person for knowing him. I will always be indebted to him, his lack of for me on the inside taught me to be open, honest, respectful and mindful to myself and everyone I come across in life. I am better than no one and no one is better than me, we all have equal footing.
Thankfully, I learned this by watching someone always feel they are better than everyone. I learned that I am beautiful and I have a voice. My husband taught me this by doing many things, but most of all, by having a favorite saying for me: “Shut up and look pretty.” Yes, I realize I am physically beautiful, but I don’t care. My voice and my spirit are in beauty. I learned to scream from the rooftops. My path is open to a future of beauty, honesty, loyalty, love, devotion, and most importantly, true happiness.
Prepared By: Jennifer Cusano
Jamie Squires—originally from Mobile, Alabama, now living in Boulder, Colorado—is a Mom, photographer, dreamer, aspiring yogi, cloud watcher and is living with Lupus and dealing with chemo. She shoots stuff. She gets the giggles. She wins big at blackjack and will give you everything in Texas Hold ‘Em. She is generous with her spirit and her laughter. She cries when she is angry and tends to make excessively long lists. She eats meat and drinks beer. She hates wearing shoes. She’s passionate and pretty magical. She’s happy and loves anyone who makes her laugh. She is covered in ink. She likes cheese. It doesn’t interest her what you do for a living, she wants to know what your dreams are.