Things Lost Along the Way, Endo Version
I sent my family ~ Hubby, kiddos and my parents ~ all to church this morning without me. It’s in that moment, when the door closes, and I’m not with them, that it hits me ~ now that I have all this healing time to think about such things ~ it hits me the things that I’ve lost while living with this disease called endometriosis.
Oh yes, it stole my fertility, and that right now, has been my focus of grief (I hope now and FINALLY…please God, let it be so!). And I know from all the counseling I’ve experienced with friends, family members and parishioners who have lost, that part of the process of grieving something or someone is recognizing fully what you’ve lost. It means making space for the accounting of what is lost along the way, what is lost in the finality of it all. Funerals are created to do this, to give people the starting point to recognize the magnitude of their loss and begin to deal with it all in order to make room for moving forward and living.
Hey, maybe I should have had a funeral for my uterus? Now that would be something. But I digress, because frankly this really isn’t about the loss of organs or functions. Although I’ve been strangely surprised by what it has taken to come to terms with the fact that part of me was indeed removed from my body, I know that as well is a part of the healing process, of coming to the point of accepting all that has happened.
No. This is more than the loss of my fertility, even though that has been a focus at times. No. It’s more than that.
It hit me a couple of Saturday nights ago, as I watched my kids leave the house with Hubby and the folks ~ they left me behind to rest (I had only been home two nights by then) ~ that this disease has taken more than just my fertility and the possibilities that come with that part of me. It hit me full force as they headed out to chase down the Olympic torch which was winding its way across our province (and came right through our city!), as they went out together without me to do something I had looked forward to for a really long time and wanted to experience, wanted my family to experience… as they headed out that door, it hit me that this disease took that experience from me.
And as the door clicked shut behind them and I was all alone ~ that night, and this morning as well ~ tears flowed.
What have I lost?
Tears flowed and then and there, I realized I needed to make an accounting of all the losses, not in an act of feeling sorry for myself, but BECAUSE I need to move through the loss in order to move forward into the life on the other side. I must recognize the impact their reality has had on my life. I don’t expect anyone else to understand this need, but I am embracing it as a healthy part of grieving, a milestone so to speak, something to refer to if I need to to say You’ve lost but you ARE moving forward.
What have I lost? What has this disease taken from me?
Endo has taken so many experiences from me. There are many moments ~ even days ~ when I didn’t have the energy to emjoy what we were doing, but merely just enough to push through it, to endure. There have been alot of times when I have dealt with physical pain that zapped whatever extra energy I had. And even my awful mood swings… they could ruin a perfectly sunshiny, fun day because in spite of my best efforts, my emotions and inability to rise above it all got the best of me.
And it’s not just about Olympic Torch Relays, or laying on the couch on my eleventh anniversary (happy 11th Honey!!) unable to celebrate except accept a warm hug from Hubby several times through out the day. It’s not even about the big things. It’s about the small everyday experiences that have been lost along the way, in the fog of white-knuckling it through on those days (which I will add, has not been EVERY day) when I just had to work through how I felt physically to get done what needed to be done, when I had to put on that determined smile because I didn’t want this disease to beat me.
The loss from endo is all about not feeling up to going swimming on a Sunday afternoon with Hubby and the kiddos because I was just too tired.
It’s about dreading certain events that were happening in our life because I would be on my cycle during that time and know that it would be hard.
And not going to other events, important things, for the same reason.
This disease has affected my ability to invest in certain relationships, ones I long to give energy too, but I just can’t because I hurt, or I’m tired or I just don’t have any cope left. I’m sure there are people who see me as standoffish ~ and I am far from it when I am feeling like myself ~ or controlled in my feelings, when in fact, I am making every effort to control so I don’t lash out or cry at every turn, or make mountains out of molehills. I have put on that controlled front in an attempt to salvage relationships that might be damaged had I expressed what I was feeling on my worst days. That’s the reality. And I miss my warm, relaxed loving self on those days, and I cry myself to sleep with regret for having to put so much energy into getting through rather than just being.
My loss encompasses things like being short with my kids when they didn’t deserve it. All because I wasn’t feeling well, or felt like I was barely hanging in there.
It embraces all the times I pasted a smile on my face and dug deep even when I was feeling nowhere like myself in that moment, but did it because I had a job to do.
This disease has stolen my energy and focus for so long, fighting to get through each cycle, surgeries, ultrasounds, cysts, doctor appointments, decisions about treatment, medication… all that but the loss of energy for daily life and doing the things I’ve wanted to do…that is a huge loss.
That may be the biggest loss of all. There I said it. The biggest loss I have experienced from this disease just may not have been my fertility after all. That is huge no matter what. But it may not be the biggest loss in the end. Not having the energy, or rather, expending so much of my energy just coping with life rather than living is a much bigger deal.
I wonder what I could have accomplished in my life if I hadn’t been fighting this disease this whole time. Would I have been a better pastor? Or wife? Or mother? Or daughter? Or sister? Or aunt? Would I have suffered near the amount of time being depressed if it weren’t for this disease? Would we be in the same tight financial position if I hadn’t had to deal with this? After all, maybe I would have been able to cope better with life, and work more to earn some money, if this disease hadn’t been part of my focus?
And if I hadn’t had to spend so much energy coping, maybe our dream of bringing more children into our family through foster care might have happened. Or maybe we might have been able to last in two previous ministry assignments. Or maybe… well, I could play that game all day, the what ifs…it won’t do any good.
But…
It does do me good (I HOPE!) to say out loud in the writing sense of it all… there are tangible yet indefinite losses associated with my disease. This hysterectomy may bring about the beginning of physical healing for me, but I must~have said out loud that there has been loss related to this disease. I must… have as of this moment… said it outloud.
THERE ARE MANY LOSSES associated with this disease. And the worst isn’t my fertility. The worst is the stealing of my joy, my regretful inability at times to be grateful that I’m alive, the constant revisiting of things I must move through. The circular cry of “why” and “I don’t deserve this” that expend so much but are so hard to recover from. Then there’s the getting lost in the grief so much you can’t see the blessings. And again, regretting that THAT is the way I’ve lived at time. And the longing to just be done with it, but being stuck because it’s overwhelming. I don’t want to be stuck. I want to move through it.
Yes. I want to move through. I want to live. I HAVE A GREAT LIFE. I am a child of God ~ and my God lets me wrestle with him about these things, and I am certain I will continue to do that, but I know I am a child of THE God who desires His very best for me, who blesses even when we don’t deserve, who cries at our losses, especially these kind, the kind that happen when the imperfections of the world invade our life and we haven’t done anything to invite them. And I can say once and again and finally, that I know God has walked with me, that He knows about these losses, that He doesn’t like them either, that He grieves when His children grieve. And I hang onto that… although it’s embarrassing really how many times I have shaken my fist at God and said “YOU did this to me and I want YOU to fix me!” only that isn’t the point but rather, MY OWN DREAMS that needed fixing.
I wanted certain things certain ways. I have come to believe that God did too. But it didn’t happen that way and because I live in a world where loss exists as a part of life, this is my loss… and what am I going to do with the aftermath? Am I going to move forward and live and get healthy and be the strong woman of God I was created to be? Am I going to allow this loss to make me even stronger, more compassionate, more fully alive than ever before? Oh God, let it be so! I pray it is so.
And that’s where I am… praying and once again, as always, hoping and trusting that the fullest healing, the fullest reconciling of these losses are yet to come. That is where I am.
Praying.
Trusting.
Hoping.
Living.
Grieving.
Dreaming.