Response to Broken but Living
It is almost five a.m. I should be asleep, but every morning about three a.m. I wake up when I feel the discomfort of a full bladder. I am not in agony, but it is low grade pain that tells me I am getting overly full and I had better get up to do something about it. I do. First I had to drain off the top like a normal person. But it is not enough. I put the lights on full and do what I have to do to relieve the pain. Doing self cath when I am half asleep has now become the norm. But by the time I am finished and cleared away and washed everything, the bright lights often have me wide awake. I shut the lights off and try to go back to sleep. I often can, but sometimes can’t. Within an hour if I cannot go back to sleep, I turn on the TV. Sometimes that makes me fall back asleep and other times it doesn’t.
The problem with not sleeping at night is that it is so quiet you begin to think. Regardless of how much I try to be normal and move forward, I am left with the consequence of mesh, even though it is no longer in my body. It is the reason that I am awake now. I would not be doing self cath if I had never had it in my body and I regret the day it was put into me. I regret something I never even understood what it was or the consequences of it being in my body. Stupid regrets that don’t make any sense.
Yesterday I went to a therapist to see if anything can be done for the constant dizziness in my life. Of course there is no simple fix or easy answer and I knew that from all the reading I have done while I lay recuperating in bed after this last surgery. You want an instant fix so you can switch your mind to normal living but if I have learned anything at all about the experience of mesh complications, normal is not easy. I am not one of the lucky women who had it removed, healed and are able to move on as a normal person. I have to cope with the fall out and it will not allow me to forget.
There are times when I want it all to go away. I want to be back in my care free pre mesh life. Wake up, full bladder, go to pee in the bathroom in the dark and go back to bed and sleep. No thoughts of doctors, therapists or treatments. I want to get up and do things I took for granted. Work on my house. Clean up, paint, bend up and down, step on a ladder and climb it without pain shooting in my groin. Deliriously free from mesh and the results of what it has done to me. Instead, I wake up with a nagging ache in my stomach telling me I had better get up now and do something. I turn the lights full on to wake myself up so that I can do the job I must do. I often lay while doing it wanting to fall asleep but I can’t. As soon as the draining ends, I feel a sudden discomfort of my bladder being empty and I have to remove the cath. There is an odd reaction to doing self cath. First that sudden feeling that you have to remove the cath to feel relief and almost instantly after you do, a feeling of peace in your bladder. The two reactions are quite confusing to your brain. If it were not for all the bright lights I would probably fall back to sleep right then, but they make me get up, clean everything up and then I can go back to bed. Sometimes I lay there feeling the relief of a bladder that is no longer restricted and full. It feels good to not feel anything and I begin to relax again. If I am lucky I will fall asleep. If I am not my mind is full of what I can do to move forward. The frustrations are endless because the restrictions in my life make moving forward an array of constant obstacles. I hate it.
But I always remind myself I am so lucky. The mesh is out and that is so much better than having it in.
After I posted the last blog I received many notes from women who told me what I wrote made so much sense to them. No one gets it even their closest loved ones. It does not matter how ‘well’ they look on the outside, they feel terribly broken inside. The following is a long email I received from a woman who probably will never be able to have the mesh removed, due to the critical state of her health. But she tries hard to put on the face of normal to her family and her everyday life. It makes me think about how lucky I am.
“Good morning. It is a bit after 4 a.m. I am up walking about, reading, praying and facing the nightly battle with my mesh complications, heart and lung. The house is quiet. Indeed some of the strangest things happen to those creative that others do not see. Our thinking is always is a spiritual visual. The words you have shared for years on your blog are blessed but they are written by the finest mind I have ever met. I am sorry wet met in the trenches. My husband loves the movie series “Band of Brothers”. You have created a “Band of Sisters” all uniquely wounded by this war known as mesh.
I went about trying to find an article that helped me gain a historical view of the fairy above and the woman who stopped and saw her as she lay there broken. My first thought is the breaking allowed her to come alive and not remain glass alone. She is now there, helping you in your studio. Here is a very good site that when you have time to read you will love, fairy lore, history, legend etc… http://www.endicott-studio.com/rdrm/rrfairies.html
In this article I learned that there are:
The Trooping Fairies, who are gregarious creatures fond of hunting, feasting, dancing, and holding court. Trooping Fairies rise above the war to celebrate life. These fairies are from the British Isles… how fitting for you and Simone, so as you sit among the broken field and gaze out upon the world from a state of creating a new normal you remember, you are divine trooper.
As you looked at the amount of pieces and saw immediately it was obvious that some were missing… your thought that the fairy was as broken as you are is also divine. I hope you take my small suggestion to heart and enlarge this photo and frame it for your studio. When you look upon her I pray you find that refreshing knowledge that she is released from a state of frozen glass… pain…where she could not become alive again unless she had been broken.
You took the photo to remind you of how broken you feel and how broken many women must feel all because of bladder sling mesh. I am one of those women, awake and watching the ones I love, who cannot see how broken I am. The fairy’s face is perfect, As you said, ” When you look at her face you don’t see all the broken pieces of her body. All you see is normal. Well that is how we are. Normal to others but inside we are in a mess.”.
A mess indeed and when I try to explain they glaze over with self pity, pity for themselves wondering how to continue their normal which consists of my daily mothering, grand-mothering, wifing, daughtering, sistering and standard demands of those I have always been so strong for throughout their life. Cutting apron strings so I can find time to rest, pray, weep and try to dream is the fabric of life in Alabama. As I write this email I am struggling to wait for daylight, I misplaced my fluid medication and my bladder is so painful so full. I think along with emptying through medication I may finally submit to learning self cath for times like these when it is so painful and I cannot wait on medication. Your courage is teaching me to press through.
You are so very correct…”We try to put on the best face possible to the world around us and yet inside what we can’t see but can feel, keep our attention. We brush aside those odd pains, but they haunt us.” I wish I had a faucet fairy one to turn my bladder on and off and to help me void and balance fluid for my heart to pump and my lungs to deflate. Instead I have been sent you, to give me the courage to manage it all the best I can.
The small brush of your little dog which sends a jolt of low grade pain through your pelvic region are such well chosen words. Words like these I cannot find often when my grandson bounces about my lap as he rushes up to tell me something he has discovered or a story he has made up. Yesterday, he said, “Mawmaw I wish you did not have that porcupine in you, because you are sad, you walk funny, you cannot run and sometimes I see you cry.” I am so glad he loves me and so sad he sees me broken by mesh, he is departing to school in ten days and it will let him have a new normal not witnessing daily the pain of the porcupine of mesh from the outside where it stops his Mamaw from playing as he wishes. His new friends will fill his gap of the lagging Mamaw who cannot play all day.
There are so many afflictions, pains and sorrows that life brings, for me mesh is the porcupine, the prickliest, pest, intruder of modern medicine, it is a synthetic rodent in Latin the quill pig that even if removed will leave its footprints in my future. None of us can understand the toll it has taken upon each other but we do know the weight of the toll. Often it is simply more than we can bear. My new normal and the balance of this year is to learn to self cath, get to Dr. Raz for consult only and to return home to welcome my second grandson. I cannot cope with the unknown with my daughter ill and now learning the baby is breach. I am pressing to help her not have a surgery that could result in any mesh product being placed in her and a healthy delivery of my grandchild. I know in the hardship of your life you catalogue the sorrows of myself and others as we are a circle of friends.
As you get back to the living of your life I thought of this…I thought a granddaughter was about to appear in my life, I embrace that and it is a little boy, as the moments settled around the news, my grandson was dancing in the sonogram room and singing…I gotta a brother…I got a brother. His prayer had come true…his voice heard. He needed a playmate. All my little girl dreams erased…I had mostly hoped for a daughter for my daughter, as you and I are so comforted by a daughter. I wanted her to have the same. Instead like Princess Dianna she has two sons, for which she shall live her life. So, now granddaughter fairy dust is sent by way of prayers to your studio, to help the released fairy who escaped the glass where she was bound unable to help you. Had the child been a granddaughter she would have been named Ali, so may the spirit of Ali dwell with you in the form of a fairy dancing in your studio and living in your heart. I hope one day to visit you on my route to or from UCLA until then I will live better because of you courage and the level it pulls me to when I am too overwhelmed to pull myself up. You and your writings are there…they appear as pixie dust in my life to give me strength, make me smile and to know I have a sister who knows.
All I have left in my sick room is my chair, our grandson bunks in with a bed his Papaw built as we prepare the other for his mother and new baby that was his bedroom and while we finish remodel for our basement apartment so she and her sons have the upstairs in the months ahead. The sale of our home has at this time fallen through. You again have stirred my soul…in writing… Everyone has to find their way back with whatever makes them happy. “No one can do it for you. No one can fight the broken feeling inside you but you.” That is my new motto in life.
My dear friend you should not give a damn what others think of you for you are so above the normal and for those of us who grab the nuggets you transmit across the internet a divine fairy of grace to us all. You will regain your kingdom of creativity and strength. You will find so much more than you can imagine as you await the return of yourself. I do expect miracles for you the tiniest ones throughout your day to return to you what you will never type in detail that you are hoping for and missing most.
You wrote…We have to fight to overcome it and fight to live again. That is what you are doing and it is what I am doing.
I hope my email was welcomed and not toooooooo long, I know you need your rest. I wanted you to know you are read and reread and placed upon the desktop of my heart as you help … literally help keep me to fight to live. I love you and I am thankful to you. Love T.
P.S. If you can find your fairy pieces glue them to a base of your design in an arrangement much as she fell broken…then find a tiny dust pan and tiny broom even if hand made by you… to place in her hand…and there she is … your fairy sweeping together your life with you once again. You may even want that base to be a version of your studio…from hats to fairy sculpture you may go…designing hope for broken women. ”
I had thrown the fairy pieces away and I have no regret. I did not like her brokenness and even if I had glued her together, there would have been fragments missing. I want to be fixed and don’t want to be reminded of the constant brokenness I feel. There are too many things around me that make me feel that way as it is. A walking stick by my bed in case the dizziness and leg pain is too much one early morning. Paraphernalia I need to keep my bladder working the best way possible. I’ve hidden away what I can, but some things I can’t hide. As much as I try I cannot pretend all is well and go on the way I once did. I struggle to move forward. I battle my thoughts because my body remains broken. But I never stop working at it. It’s what the world around me wants me to. Be normal…………………
If only it were as simple as saying the words…………. “I am normal”.