This was originally written as a Facebook post by Eileen Dougherty Smith. She is recovering from the same condition as I am and has, in fact, had the same surgery as I did a few weeks before me. After reading this, I asked if I could post it on my blog.
Admittedly, she is currently facing more challenges than myself, but her story captures all frustrations I’ve been feeling since dealing with this. It’s a good read and it expresses what I’ve been thinking better than I could do myself. With her permission, she allowed me to post it here.
How it has felt to become lost in chronic illness…
I am used to being physically strong. Naturally competitive, to the point of being a wanker, I’ve always pushed myself to the limit of my physical endurance. I was never content to come in second or third place, it always had to be first. When I ran, I pushed myself so hard to win that I would almost burst through my own skin, straining to move ahead of anyone who dared pass me. There was never a time I considered myself weak. Of mind, maybe sometimes, but of body? No way.
I could rearrange the large furniture in a room in a few hours, decided I hated it and move it back. I could hike mountains and walk for hours through ancient cities, like I did back then when I was young and strong and I was exploring the world. I never got tired, not really, truly tired. My body was one thing I could always count on to be there for me; strength was my constant companion.
I can still hear the cheers of my drunken friends in that Portuguese bar where that huge South African man challenged me to arm wrestle him — and I won!
It never once occurred to me, in all my life, to consider what it would feel like to be disabled. I tried for the sake of friends who had those problems, to empathize with them but I never really could imagine what it felt like for them. I never judged, never have judged people anyway, but I certainly didn’t understand.
Now I’m on the other side of a disabling illness. I’m improving, though I have far to go but I know things could be worse, I know this.
I have degenerative disc disease and spinal arthritis. The doc still isn’t sure that I don’t have ankylosing spondylitis but time will tell, I suppose. Most of the time now, I have to walk with a cane. So much of the time, I feel broken and self-pitying, maybe much more so than if I had been born this way. I have no frame of reference for this, no concept of what it means to not be able to do everything I want to do in a day. My old life is now just a memory as I consider which of laundry, dishes or showering is most important on the agenda because I can ONLY do one of those per day. I could shoot for two, but I’d put myself out of commission for days afterwards by expending too much energy and I’ve discovered it’s just not worth it.
Most of the time I think of myself as a whining child, pathetic for being so overwhelmed by a comparatively minor chronic illness. I know so many who suffer with so much more. What the hell makes me think my suffering is so damn special?
I think of my husband, who is snoring softly beside me as I write this. He believes in me and supports me so deeply, he has put a good deal of his life on hold to help me cope with the daily frustrations of living. For me, simply standing at the sink doing dishes only lasts about 20 minutes at a time because the pain becomes so bad, so fast. He is always ready to jump in and take over. He is always ready before I even know I need him.
I wish for the gift of my strength back, so that I can use my powers for good, not just for competition. I’d like to show him how I can assemble a child’s bed, clear a yard of debris, do ten loads of laundry, change the oil in the car, make a gorgeous dinner, sing three kids to sleep, and still be awake and ready to be with him later. At one point in my life, I could do that. I want to WOW him with that person and give him the feeling that he might have married a superhero…but that doesn’t seem to be on the agenda; at least not anytime soon. Fortunately, he is sensitive enough to my pain to understand that whatever I can give in a certain day is my best and he loves me just for trying.
My children have adapted nicely to mom’s slowness and clumsiness. They know now that if mom so much as stumbles, even slightly, that grabbing hold of my arm is a good idea just in case I fall. They know that only minor contortions of the body can result in mind-numbing pain for me. They know I can’t bake cupcakes for school and drive the carpool for lacrosse and sew on patches for scouts and get dinner on the table at five and make sure they all have clean clothes every day the way I used to. My family is now accustomed to accepting and expecting so very little from me that it shames me. But they’re okay with it; they love me just as I am and accept my limitations.
Friends send cards and letters and emails, constantly checking in. My family sends meals and drops by with magazines or a new knitted blanket for me. Everyone understands and accepts that this is who I am now.
So why? Why can’t I accept it? Why am I so disappointed? So broken? If everyone else can love me for who I am now, can see past the me I used to be and love me just the same for how I am now, why can I not see it? Am I afraid acceptance means defeat? Am I afraid of dying this way? Of never becoming more than what I’ve dwindled into? I see the playing field cleared of all my potential and all the goals I wished to accomplish. Instead, the goals that stand in front of me now are things most people take for granted, like walking without dragging a leg behind. I’m not satisfied with these goals and I want to break the glass ceiling of my condition to push past and become myself again. But I can’t. Not now, at least. And that’s where I remain stuck, frozen in time as the woman who drags her leg. And this is all I can know now and have known for over two years; I only pray that there is improvement in sight. But even while that thought still occupies space above my head, I’m already angry at myself for thinking it. I’m so lucky compared to so many. What right do I have to feel such pity for myself when I have been so blessed?
The key, I’ve found, comes in redefining what it means to be blessed and to be victorious. It takes time and patience with yourself to accept your limitations and forge ahead anyway. It takes patience and courage to build yourself anew after you’ve been so shattered.
The new person that I become as I emerge from this time may not resemble someone I recognize, may not be anything like the past incarnations of myself. Until this point, though I’ve reinvented myself plenty, this is the first whole body reinvention I’ve done. This time, instead of showing love for my own broken heart or sadness, I’m trying to show my broken body that ME, the spirit of who I am still resides inside and I still believe in myself. I still believe my body can do more than I hope or expect. But I require patience to move through each day with love and kindness for myself as I heal. Constantly berating myself and feeling disappointed has done nothing whatever to help towards my healing; I had to find a better way. I am choosing to love and care for me the way I would for someone outside myself who was in my circumstances. The people I love care enough to show me how much they love and believe in me. It would be pitiful were I not able to do the same for myself, to show compassion for one that they all love so much.
This has not been easy to redefine. It’s never been easy to rebuild yourself and rise from the ashes. I’ve spent so long dwelling in the ashes, losing myself in isolation and fear. But in showing myself love, I feel a new time coming, a new energy forming. I finally feel like it’s time for me to RISE, to take my place in the sky among those who can fly!