Henoch-Schonlein Purpura
Or HSP. My personal pronunciation over the past few days has involved a few more swear words mixed in. It’s an autoimmune disease that is rare, 1 in 1,000 kids get it. I know of about 3 other people personally who have dealt with it in their families. It came into my family’s life about 6 years ago and landed in the joints and kidneys of my oldest daughter.
She was 6, melodramatic, active and precocious and very healthy when the letters HSP came to mean something to our family. This is a child that could use general anesthesia to remove a splinter. She’s very vocal and has no problem expressing her opinion in a theatrical manner. And I, being her mother, am not a pinnacle of patience. At the end of her dad being out of town for a few weeks, she was doing as she often did – having some major drama. This time it was whining about walking. “But Mooo-oooommm, it realllly hurts.” “If it hurts that bad, then we need to go to the hospital, if not, start walking and quit whining.” Her dad was due home the next day and I said this with 100% certainty that she was just fine and was looking for attention. I couldn’t have been more wrong. As parents, we have fail moments; this was one of mine. (Though, my penance has been 6 years so far of living with now self-assured teenager who loves to remind me of this.)
I arrived home from work the following day to find her normally calm and collected father saying to me, “You need to see this. I think something’s wrong with her.” I found the child who never naps, passed out at 7:00PM with purple splotches on her left knee, ankle and foot, with her knees and ankles swollen. I knew, as her dad had, that something was very wrong. We took her to the after hours clinic that was attached to the Children’s Hospital. She had to be carried to the appointment because whatever was happening to her was progressing quickly and aggressively and had robbed her of her ability to walk.
In the office, I learned the lesson that when the staff that is there to be efficient, productive and clean, softens and relaxes rules, there is something bad happening. In my minds eye, I see her dad standing her on the scale to get her weight and her 6 year old body melting to the floor. I see us venturing to Rite Aid after the vials of blood were taken from both arms, to find some crayons and paper. I see the three of us having a picnic dinner of Taco Bell in the courtyard of the hospital at about 9PM, waiting for the results, but not being allowed to go home.
As life would have it, the doctor on call was one in our practice that she knew, which was a godsend, for all of us. As the vials went out, we were given no word of what they were testing for, only the solemn looks from the doctor that we knew and the intern working with us. Later we would learn that the tests being run were to rule out things like Leukemia and Meningitis, which no one was sure would be ruled out.
When the results came in, they were a relief: Henoch-Schonlein Purpura or HSP. Rare, but would resolve itself, normally in 6 weeks. They would monitor her urine as HSP often attacks kidneys. Maybe a result of a cat scratch, maybe the result of Strep, maybe the result of the antibiotic to treat Strep. Somewhere along the way, her body made a copy of something that was bad and started attacking the copy. In essence her body was battling with itself. Her regular pediatrician saw us and said he saw it about once a year, but that it would run it’s course and be gone.
I read about it online, asked questions and was satisfied with my understanding. It took 6 months to clear her system, but most of that was internal and without discomfort to her. The initial pain eased in days and the follow up was a few visits with a pediatric renal specialist until he gave us the green light that she was clear of HSP. He also shared with us that he’d only had one negative outcome of the disease. Though he’d seen kidney failure and dialysis happen from time to time. With HSP, it will do what it’s going to do early in the onset and then improve. It doesn’t get worse.
From that time, it’s been in the back of my mind, but mainly served as a pain gage for her and a lesson to us. Her urine is routinely screened and we watch for further autoimmune issues, but HSP has by in large been a thing in the past. Or so I thought, until this week.
My now 12 year old, is my height (5’3”) and has the body of a teenager. She is slim, reasonably graceful and healthy. She likes physical activities and is looking forward to competitive sports. Six months ago, her leg seemed to change shape. I kept thinking, “I don’t know if it always looked like that.” Her knee was bending in. I scheduled an appointment with her doctor, who referred us to an orthopedic specialist. She had her first visit there a few weeks ago, when they found that she has genu valgum, or knock knees, on her left side.
There is one solution to this problem; have a surgery that cuts into her femur to balance her leg and stop the inward bend at the knee. Not something that in this office is considered terribly unusual. The unusual part comes with it only appearing in one leg and having had no injury to that leg to impact it’s growth. It was the doctors next words that left the sink in my heart; “Oh, she’s the one who had HSP, right? That’s probably what did it.” Flashback in my mind to my tiny girls body lying in the chair with the big purple mark on her left knee. The doctor showed us the scarring on the x-ray of her bone.
The HSP did more damage than we ever knew, ever thought to know. It attacked her bone and left it stunted. Had we known earlier, there is a less invasive surgery that could be done, but it’s not possible at this stage in her growth. She will at some point in the not terribly distant future have a surgery that involves sawing her bone, inserting screws and reasonable enough risks that the surgeon recommends a wait and see approach.
Same precocious, self-assured girl is turning into a phenomenal woman and will handle whatever life hands her. Her dad and I are both resourceful and reasonable. This is by no means the end of the world for her, even when the surgery comes. She has agreed for me to tell this story because it is my, her and her father’s belief that if we had known the level of damage that had happened at the time, we could have prevented the extent of the interventions.
My experience leads me to this suggestion: If your child has had HSP, advocate for testing to find the true extent of the damage. Had I not mentioned it on the paperwork, had the docs been a little less informed, we may not have made the connections. We are blessed to have had the professionals involved that we have had. It’s an odd and rare illness that has a mind of it’s own. I am praying that this is the end of its impact on my daughter’s life, but I do not know that. I can’t know where else it may have attacked and scarred that won’t be understood until an issue presents itself.
The doctor’s didn’t fail. God isn’t angry. No one did anything to earn this. Sometimes shit happens. This time, it happened to us, to her. I am grateful for doctors who have been supportive, brilliant and aware. I am in awe of the strength that God gives to make it through life’s shit. I am amazed by my daughters spirit of humor, intelligence and charisma. I am pissed that HSP attacked my child. I wish it would have chosen me. I wish that it would present itself as something that I could punch in the face. That’s not how life works, so I write this in the hope that our story might impact someone else’s story and maybe lessen the impact of the disease – there’s my kick to the crotch of HSP.
Body Blessing
Body Blessing
Recently I went to a new practice for my yearly female inspection, which I was about 4 years overdue on. I went because I found a lump in my breast, nothing like a moment of terror to provide incentive to get moving on a procrastinated appointment. I happened to find the same lump that most of us find, the one that is just a part of aging. Yes, at 38 I got a sign of aging. Nothing to worry about, just accept that I’m not 21 anymore and I have a few more textures than I used to. So that part of the appointment was a relief.
Then there was the urinary questionnaire. Now, if you’ve ever laughed with me, been next to me when I sneeze or cough or have seen me run, you know that I might just have some issues in this area. My run: Step “No” Step “Crap” Step “Ugh”… My cough: Running to the bathroom with as fast as I can, while coughing, cursing and holding my pants. My sneeze: One hand over my mouth and one grabbing my crotch, while my legs cross. My usually uproarious laugh is often accompanied by me taking a deep breath and sprinting to the nearest toilet, yelling some profanity in my wake.
Needless to say there were a LOT of yeses involved in my bladder questions, okay there was one no, but the other 11 were yeses. As I finish my appointment and my doctor looks at the answers she asked if I’d like to make an appointment with someone who could help with this issue. My answer: Ummm…YES!
There was the initial appointment where I spoke with Dr. L; a smallish sized, very sweet, Indian doctor. After he assured me that something could be done to help me solve my pee problem, he pulled a bladder hammock from his pocket to show me the material. My initial thought was, “Well, I guess if he does it so much that he carries it in his pocket, that’s a good thing.” Followed quickly by, “God, Please let him get a fresh one for me.” At the end of this appointment we set a date for the testing.
The testing involved having a full bladder and peeing in a commode hooked up to wires. I was faced with only a small fear of electrocution. I did this behind a curtain, not in a bathroom. With a nurse on the other side monitoring my peeing. Now I understand the look that my dog gives me when I’m watching her thinking, “Hurry up, already!”
After the bladder is empty it’s time for a refill…from the south end. This in general is not a pleasant experience, and here I was with the doc, the curtain commode and the nurse who seemed baffled by the equipment. Dr. L talked to me calmly about everything, but my peeing. It didn’t really distract me, not much outside of a winning lotto ticket could have accomplished that. But it was a good effort and I was appreciative.
He refilled my bladder until I signaled him that anymore might cause an accidental explosion. And because I am brave and tough I pushed that limit. “You can empty your bladder now.” “Ummm, where?” Were my words following my first thought of, “Okay, your floor.” It was back to the commode behind curtain #1. Except this time with all of the wires taking measurements of all sorts of bladder related things not only attached to the commode, but now to my neither regions. “Do I take these off?” “NO, they are still taking measurements.”
After a brief consideration of how this was all going to happen, and weighing the idea that I am not the most graceful person against the idea that without ninja like speed I was going to tinkle on the floor. I managed to get over to the commode, pull the curtain, only to begin to relax when the lovely nurse says, “Wait a minute.” Are you #$%&ing kidding me?!? “The readings aren’t coming up, there’s a problem.” Why yes, yes there is. “So, can you wait a minute?” “I. Can. Try.”
At this point I was saying every prayer and mantra that came to mind and imagining myself in a desert. The irony of being here testing to see if I could have my already weak bladder fixed and being asked to perform the skills of superhero power to hold it was striking. The nurse grabbed another nurse who grabbed the doctor who said something to the effect of, “I don’t need it.” THAT was all I needed to hear.
Ahhhhhhhhh…
Two weeks later the test results were in. Yes, my bladder has some issues and yes, there is a way to fix it. I will have a surgery that will lift my bladder back into its place before pregnancies and I will have a monarch sling. I am a little apprehensive as I have never stayed in a hospital or had surgery at all. (Both girls were home births.)
This surgery is about a lot of things for me. It is time for me to take care of me and that includes having the luxury of not thinking of my weak bladder every day. It has been this way for 12 years; I honestly do not recall what it is like to not think about my need to pee before I exercise, go out with Girlfriends or have allergies. It’s just a part of my daily life. Well, until today. That is when I will be having the first surgery of my life. This is the step in my journey to embrace this blessed life that is about honoring and caring for the vessel that I reside in: my body.
How Should I Feel?
The Counselor answer in me says: However you do feel is how you should feel. The Christian answer in me says: Pray for all, even your enemy. The American in me says: Your country was attacked and finally there is relief and closure. The Humanist in me says: The unity of celebration for this day is only surpassed by the grief of that day a decade ago. The Logician in me says: Our world was forever changed, not simply until this particular attacker was killed. The Mom in me says: I don’t know why.
When the news came last night I listened and absorbed the killing of Bin Laden. I felt a sense of pride that our troops, the bravest among them, killed this man. Relief came next; it is done. Not terrorism, but the endless hunting of and taunting from this person. Followed by a sense of hope. Hope that maybe we remember what it is like to be united with one another, not simply as a country, but as a people that have experienced loss and have found a resolve.
United States Citizens’ today are a collective. However we as individuals process our emotions and experience our unique perspectives, an act of terror happened to us, as a country. The face of the perpetrator of those events was killed at the hands of those who he acted against. There is justice in that, I believe. This is our justice.
Justice, however, is not what Christians are called to. We are called to the highest of standards: love. In this instance, I fail. I do not love my enemy. I cannot seem to manage even the words, “God rest his soul.” When I am in question of the “Shoulds” of life, I go to my faith. At this moment, my very human heart, does not like what it finds. I want to hear that what I am feeling is right. I want to hear that I’ve earned the right to be vindictive and that I don’t have to love everyone, there are exceptions. Terrorists and Pedophiles – surely they are exceptions.
Part of what draws me to Jesus is that He accepts me as I am, where I am, flawed, struggling, broken and all. Part of my love of my faith is that it challenges me to be better, stronger and more myself. This moment is requiring much of me. To be better I have to understand that each of god’s children is worthy and that the same Christ that has wept for my brokenness has indeed wept for the brokenness of his children that become terrorists. To be stronger I have to know that I am capable of many things, including doing what is hardest for me. To be myself I have to find the balance.
Life in Limbo: The Waiting Place
Limbo includes waiting for a lot of things: waiting for a job, waiting for emotional resolve, waiting for a decision about housing, waiting for opportunities, waiting to pay bills, waiting, waiting, waiting. Anyone who has sat in a waiting room knows well the frustration of the Waiting Place. Especially if what one is waiting for is an appointment for something big, like a child’s diagnosis or a treatment for severe pain. There is relief when the wait is over, even if the result isn’t what we’d hoped for, because there is movement forward – that thing that the Waiting Place is void of.
In the words of the most poignant doctor of them all:
You can get so confused that you’ll start to race down long wiggled roads at a break-necking pace and grind on for miles cross weirdish wild space, headed, I fear, toward a most useless place. The Waiting Place…for people just waiting. Waiting for a train to go or a bus to come, or a plane to go or the mail to come, or the rain to go or the phone to ring, or the snow to snow or the waiting around for a Yes or No or waiting for their hair to grow. Everyone is just waiting. Waiting for the fish to bite or waiting for the wind to fly a kite or waiting around for Friday night or waiting, perhaps, for their Uncle Jake or a pot to boil or a Better Break or a string of pearls, or a pair of pants or a wig with curls, or Another Chance. Everyone is just waiting. – Dr. Suess
When one is in The Waiting Place of life, it is a lonely, frustrating and a most useless place to exist. There are those in Limbo because of job loss or health issues or family dynamics or a relationship ending or any variety of reasons. But for one reason or another many of us end up spending quality – or more a quantity of time in the Waiting Place or Limbo. It is a tough place to be and tougher to understand if you haven’t been there.
When in Limbo “How are you?” Suddenly becomes a loaded and aggravating question. It seems so simple, but for those who have been in the Waiting Place for an extended time, it becomes the question of a million implications: How are you handling the separation? How are the kids? How is Stbep (Soon to be ex-partner)? Are you lonely? Do you fight? Do you hate each other? Are the kids broken hearted? Did he find a younger woman? Did you find an older man? Are you an alcoholic? Is he a gambler? Are you suffering? If I put enough weight in the question will it ease my discomfort with my own life?
Some days I’ve recovered my edgy, quick sense of humor and I am alive and funny. Other days I’m overwhelmed by the future and having to live out one moment at a time, so I am distant. Yet on other days I’m pissed at the world because life just doesn’t move fast enough. On all of these days, the emotion that is consistent and I wear like a too tight pair of shoes is uncertainty.
What is helpful is to understand that life is in transition and that sometimes those of us in the Waiting Place want a break from thinking about how deep pain runs. If my humor seems crass, get over it, it’s my hurt and my coping. If my voice cracks, it’s okay I am experiencing loss and fear in a whole new realm, sometimes I cry. Remember that I am not the sum of this one event. I am a complete human being and experience life in all of its wholeness: good, bad and ugly, as does anyone who gets stuck for any reason, for any length of time in the Waiting Place.
Life in Limbo is not easy and I don’t know what happens when I finally get called from the waiting room to hear my prognosis, but at that moment I will know that I move forward and get to leave the Waiting Place. I will follow my friends that have gone before me and I will take a deep breath and wish well to those still stuck Waiting. And I will sing praises to God that my time to step forward has come.
Mind Body and Spirit Unity: Yoga
The body reflects the state of the mind reflects the state of the spirit reflects the state of the body. I can address my body through exercise, eating healthy and keeping up on my medical health. I can challenge my mind with reading and writing and conversation. My spirit can grow through music, art and church. All true, but there is something missing in my theory: unity of all of the above.
As I continued down my path of recovery from depression and into living my life as a whole person in each moment as it comes, I realized that I had not one clue how to do that. How does one exactly live in the moment? I was busy planning and worrying about what was still to come and at the same time regretting and obsessing over what had already been. Expending all of that energy on what has been and was yet to be, robbed me of any ability to focus on what IS.
Then as life would have it, in the time when I was most in need of balance, calm and focus, I saw a blurb in St. Timothy’s (my home church) bulletin about Yoga. I had heard of it happening at church since I’d been there. I hadn’t been in a place in my life where I was ready to add yoga, until that moment. It was an intensive class for individuals really looking to make a change in their lives. I suppose that intensive and ready to make a change well described where I was at that moment.
What I didn’t anticipate was how much this new practice would impact my life as a whole. Some days yoga makes me sweat, we work hard and at times go in and out of positions at a pace that challenges my body. Some days yoga gives me clarity, when I’m asked to focus on my breath, it requires me to shut down all that stress about the future and the past and simply pay attention to my body in that particular moment. There are other days that I am asked to get into a position with integrity, not just imitation and ease; which requires my intellect.
Yoga has helped me to understand the many connections of mind, body and soul. Being able to quiet the noise in my life makes it significantly easier to hear God’s whispers. Learning to listen to my body and view it in a new light has given me new respect for taking care of it. My mind has been reflected in my body. When I was living out self-preservation, my body moved as though to protect itself. When I was depressed my body became stagnant, as did my spirit and mind. Yoga has given me access to paths of healing.
One of the keys to this process is the teacher. I won’t say “instructor” because she is more than that. Carol Williams is exceptional at what she does. She has a unique understanding of the body/mind connection and is continuously challenging and educating herself. She has a come as you are, where you are and it will be the right place attitude. She is a tremendous resource and is very clearly living out her calling.
One of Carol’s missions is to have yoga be accessible to all. There is a suggested donation cost of $7 per session (generally 1 ½ hrs.), if that were prohibitive, then she works with whatever she needs to. The other big factor is concern about the positions. There is a great word that I’ve learned in class; “restorative” which translates to anyone with any physical capability level can find a place in yoga. I, myself, have a few long-term injuries to contend with and contend we do. The other big obstacle is being ready emotionally and mentally. That is something that can only be experienced and realized that either it is time or it is not.
There are some that are uncomfortable with Yoga in a church. Clearly I am not one of those. I am devout in my faith and it has been my experience that God puts exactly what we need in our life at the moment that most need it, if only we will open ourselves to the possibilities and understand that God is greater than our understanding and will challenge us. We are all Gods children and because one tradition is born with the children in one culture, that does not mean that God, with infinite understanding of his children, will not put it in the paths of those of another culture.
My practice at home ebbs and flows. Sometimes it comes more easily than others. It includes going to my mat for poses, learning what foods work with my body and being, as well as meditation. It has altered my life in positive ways. It has challenged me to know myself better and to live my life fuller and that is a gift from God.
A Commitment Phob’s Dilemma
A Commitment Phob’s Dilemma In a recent ad for Kung Fu Panda 2, Panda is standing at the bottom of a large flight of stairs and says, “My old nemesis: Stairs.” I cannot tell you how much I relate to that. I was blessed for the majority of my life with a high metabolism. I could eat chocolate cake for three meals a day and it would make no difference. This being the case, one of the only classes that I ever failed in college was gym (that’s right), because at 8AM my lovely athletic professor in his gym shorts told my, somewhat princess behind to run a mile, so I laughed and walked away. That was the end of physical fitness in my 20’s.
Then I turned thirty and located my curves. I was mad at them, mad at myself and vowed to starve to make them go away. At this point the idea of exercise crossed my mind, but…nah, I’ll just starve and be mad that this happened to me. (Yes, you can see the princess theme still rearing it’s ugly head) Then I looked around and realized that I got very cranky when I was hungry and I didn’t look all that different from everyone else. I was just curvy.
As Depression began to take over my mind and body, about two years after the curves, I became sedentary and took meds that increased my weight. At this point, I was so overwhelmed by everything that the thought of caring for my body was laughable. When getting out of bed is a feat, exercise is next to impossible. So I gained more weight, the curves ceased to be pretty and feminine and became a burden. I hated the pounds and was bitter about their presence on my body, but so overcome by the despair that accompanies depression, that I saw no way out.
When I finally decided to take the fight for my mind, my joy, my life seriously, the fight for my body remained secondary. I had too many irons in the fire and could only deal with one at a time, so I thought. Unfortunately what we believe that we can handle and what we actually can are two different things. My mind, spirit, emotions and body came back to life at just about the same moment. It was uncomfortable to say the least. Going from overwhelmed to overload was intense, but it was time.
Over the past year and a half I have changed many, many things in my life. Another big hurdle to over come was my body. I hadn’t been to the doctor in years (bad idea ladies). I very recently got through those appointments, which in the end has opened some doors to some good things. I have been in yoga and know well that it is time to add another layer to my physical care.
That leads me to taking this 9-week challenge. It is in my nature to be non-commital, it can be infuriating to those around me, unless you know me well. I will say maybe until the very last second, because yes just seems a bit too constricting. Except that today, my pastor posted a 9-week challenge of movement for physical fitness. 9 weeks to an individual with commitment issues is like a lifetime. I don’t know what’s going to happen in 9 WEEKS?!? I won’t promise tomorrow!
But in the end – it is time. My body has gone to great lengths to live through the ups and downs that I have put it through. Now, it is finally time for me to say thank you and give back. By committing (ewww) to caring for myself in the way of 30 minutes of movement 5 days a week for 9 weeks. I have earned taking care of myself in all aspects of my life. In 9 weeks I am hoping to have developed a new habit to carry me into a new healthier way of existing.
Blue
Just at the edge before succumbing to the dark
Before immersing into the light
Is the Moment
The beginning
The end
The sliver of reality that is oneself
Before giving over to all that is
The fragment that remains individual before crossing into
The oneness of humanity
Singular time and space
It is where we merge from what has been to what will be
It is the only unique time of what is
It is where air, water, fire, earth, life, death, all that ever has been and all that will be
Fuse
With
Time
And
Existence
This is the moment that we crave
It is the unattainable goal
To return to the home from which we were conceived
Not that of the blood of our ancestors
Not that of the dna of our bloodline
That of the breath of our god, our creator, our Oneness
That which we search for in our spirit
That which is the unquenchable thirst in our soul
That crest of beginning that we will not return to until
We pass from that moment of being into the next
Ashes to ashes, dust to dust, energy to energy, life to life, this life to after life
All contained in one fragment, beginning and end, journey and path
All told, together, united
In that one
Unachievable
Impossible
Moment
Failure + Kids = Their Success
During my time as a professional with children, I came to understand a few of life’s lessons. Sometimes as a mom in my pursuit of happiness for my children, I forget who I was before I was the primary caregiver of two little girls that own my heart. Being a parent is different than being a professional, however, those early lessons with my own children are no less true now than when I was the staff person at the Boys & Girls Club that you didn’t want to get into trouble with. I had expectations that the kids, ages 6 – 18, treat one another with respect and take responsibility for their actions. Not too much to ask, right? Well…I mean it when I say that I had remarkably high standards in this area. “If you’re going to be big and tough and choose an action, you better be big and tough and own the consequences of that action – both good and bad.”
Over the years I came to understand that this part of my leadership style, the hard exterior was a trusted part of the person they knew. I became a wall that kids could count on. Sarcastic, direct and honest, but that didn’t wavier. It was and continues to be my personality. The kids came to understand that if they could be strong and themselves with me, they could do it anywhere. They also learned that when things are tough, I became as much a wall of protection for them as I was a wall of discipline. Not everyone who has the qualities of respect shares my style – thank goodness. One can be gentle and unassuming and achieve the same goals, that just wasn’t what worked for me.
It was much more in the intention and awareness of the care taking adults. More often than not, as parents, we want what makes us successful. That’s right, Us, not them. If we protect them from all harm, we are good parents. If they smile and look pretty, we are great caregivers. If we give them toys they laugh and we feel good. Though, in the end, that is not what is successful for them. As a professional I knew this well, but as a parent I’ve gotten a little lost in what makes me feel good, rather than what makes them prepared for the realities of life and to find their own way to fulfillment.
I would and will as a professional, go to great lengths to ensure that those I am working with learn their own power and strength, even when through adversity. A child who finds her words out of frustration and the need to stand up to friends, is a child who has found her voice. An Odyssey team member who cries and shakes through the telling of the truth to peers is a boy who has learned that he is able to stand up and be honest. A Boys & Girls Club member who realizes that his mom once again isn’t going to make a visit with him and his heart breaks, is a boy who knows that he can survive the worst kind of heart break and still be whole.
So, why was I hard on them and allow them to experience their own failures? Because they will and they are capable. Life will not always serve up the partner that they fall in love with. Life will not always provide the job that they want. Life will not prevent illness in them and loved ones. Life is made whole, not easy. One cannot face life without some level of strength and one cannot empower kids to face their fears if one is so busy preventing hurt, i.e. creating “happiness” that the child never learns that they are well capable of handling their own pain. It is a blessing every time that I see a child stand on their own feet and believe, sometimes for the first time, that they have done what they viewed as the impossible.
As I watch my own children grow into the people that they will become, it is time for me to pay attention to those lessons that I learned as a professional. If I protect them from all of their own failures, I will rob them of their own successes in overcoming diversity and pain that life will present them. I can be their wall of unconditional love and at the same time be their reality that though “happily ever after” IS a fairy tale; balance, contentment and fulfillment is very much real and attainable by each of us.
Life in Limbo: Our Room to My Room
After months of Limbo, Stbep (Soon to be ex partner) and I decided to take some steps forward in the separation, though we still don’t know when our residences will actually be different. It seemed after my months of existing on the sofa in the living room that finding something a bit more long term was in order.
We decided that a smaller room that we have would be the room for me. I could move off of the sofa and have some privacy. There wasn’t a long discussion, just that it was time and we didn’t know how long we would need to remain in the same place as I am still unemployed. We started to clean out that room, which had been storage and discussed what would go into it: a futon and frame that would go with Stbep when he moves.
It began to dawn on me that I wasn’t moving. I was staying and the room that we had shared, where he currently slept, would eventually be my room again. The bed would be my bed. When it was remodeled a year before it was done so as my respite, the decisions about color and style had been mine. Also, the futon and frame would be his, so why then is it that I was the one taking that space? It seemed to occur to Stbep at the same time and so we decided that it simply made more sense for him to take the new space and for me to reclaim my room. There wasn’t an argument or even a strong discussion involved in either the decision that I take the extra room or the change in that decision he take the smaller room and I take the room that would be my bedroom.
It was strange that both of us just assumed that I would stay on the sofa for months, and then that it would be me that took extra space. My question is: What’s up with that? Some things are so entrenched in the dysfunction of the relationship that the conversations don’t even happen, I assumed what he thought, he assumed what I thought, we held our bitterness close to our hearts and we went about our lives. The thing is, I don’t know what he thinks, not really and he doesn’t know what I think. What does it matter now? Well, we are in this Limbo for an undetermined amount of time (Hi, does anyone know of a job that I could have???), we have a lifetime of loving our children ahead of us and we’ve both resolved to treat one another with the dignity and respect that we sometimes missed in the marriage.
After the decision was made, we went shopping for a futon for him. It was mostly coincidental that he and I ended up on that shopping trip together. I didn’t try out the futons and mostly looked at the fun lighting and kept my mind otherwise occupied. He carefully selected his futon, without my input – which seemed odd, but healing for both of us. Then when he went to choose a cover was a basic difference between us was clear:
For years, it has been a joke between he and I, how different our style tastes are. I like practical with a colorful flare. He’s more muted and traditional. Literally, we have never found anything that we could put on the walls that we agreed on. So, the futon cover choice was his to make and sure enough, it is a neutral color (beige) that is calm and soothing. It works well. It is nothing that I would’ve chosen. I was happy for him that in his life moving forward that his surroundings will reflect who he is.
As I settled in to my bed that evening, burgundy/earth tones quilt and patchwork prayer shawl close by, it was at first with much humor and then with the quiet reality that this is my life now. Stbep and I are no longer husband and wife, we are no longer lovers and we are no longer all of the things that we had been so comfortable being for 20 years. We are just different now. He lives down the hall and will eventually live down the street and after that, who knows? Kindness is replacing bitterness, as instant messaging is replacing a goodnight kiss. Steps forward are slow to come sometimes, but with each step the view changes and new discoveries are made.
Life in Limbo: Personal Space and Changing Boundaries
As a married couple, we really had little concept of “personal space.” Sleeping together in the same bed, tending to one another when sick, knowing one anothers…undesirable realities as well as not sleeping in the same bed for twenty years leaves one with little need for personal space, until now. Now that we are taking the steps into separate lives, that brings about the big questions: When do we stop using the toilet while the other showers? When is it the right time to stop folding the others under ware? At what point is changing clothes in the others view no longer okay?
For the time being my STBEP (Soon to be ex partner) and I share a residence. Until I have a job with a reasonable income, he will not move out (which I am immensely grateful for). This leaves us with the opportunity for more discomfort than one can avoid. We haven’t shared a bed in several months. We stopped being intimate before that, as we realized that it was the only way that we showed emotion. That’s not to say that sex ceased all at once, it has, like everything else, been a process.
This however, is about so much more than sex. It’s about reestablishing boundaries that disappeared long ago. It’s also about the slips that bring us back to those places. Stbep and I told the kids about the divorce after we realized that it was already impacting them (that is a blog for another day), so it is an open topic in our family as it restructures itself. It also keeps he and I honest when it comes to things that we’d rather deny or dismiss. It does, at the same time, raise moments of, “Well, THAT was weird.”
At our youngest daughters birthday party the kids were doing a show that required us to sit down and watch it. Stbep got to the sofa first and sat. I was focused on trying to minimize the purple and black frosting throughout the house (impossible) and the 9 kids running around. I bounded into the living room and plopped on the couch next to Stbep, as I have for 20 years, our legs touching, me laughing.
Three…two…one…soooo, ummmmm, yea. Right, we don’t do THIS anymore. I jerk my head to direct my attention to our legs, for goodness sake, there is an entire couch occupied by no one and the first seat that I take is damn near on his lap. Stbep looks at me, clearly aware of the misjudgment, reverting back to “before” and says with all of the discomfort that I am feeling, “Hi.” Now, it the midst of this there are 9, face painted, gift unwrapped, frosting high kids running around. “That was a little close.” I say, still staring at our proximity, dumbfounded at both that this was so easy and so hard simultaneously.
I look over at the rest of the full size sofa, that is empty, and feel the need to make the announcement to Stbep before I actually move. “Ummm, I’m just going to move over here a bit. Sorry about that.” He has the profound response, “Yea.” Then we both move comfortably back into our roles as parents and show watchers.
This was a new dynamic for Stbep and I. We are 37 and have been together for 21 years. There has never really been a time when we were not in one another’s personal space. There have been several of these moments, sitting down to look at something a little too close, passing in the kitchen and touching an arm or rubbing a back. These aren’t the profound holding one another, clinging to the only life that you’d known, understanding that that life was killing us both grief moments. These are the, we have a new reality with one another moments. He and I will go back at times, but every time that line blurs we both become aware that we have new lines and new boundaries and a new concept to contend with, “personal space.”
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