Sometimes I cry because I’m sick.
The pain itself doesn’t make me cry, though there have been times when it has made me cry out. What makes me weep is the inversion of all that was normal in my life: health and lack of worry. Just when I think that I have accepted the new normal, frustration flares and I have to bury my head in my hands for a minute.
When I describe this it sounds familiar: it sounds like grief.
When I was first diagnosed I put off grieving for a time, because my symptoms were only occasional, and my disease didn’t affect my life that much. Perhaps I’d have one day a month of vomiting, and I’d have to go to the doctor a little more often. A part of me believed I wasn’t truly sick, that this would go away and not be a nuisance.
That has changed: I’m now on meds that require blood tests every two weeks. How’s that for a nuisance? My doctor wants to step up my treatment to include some heavy treatments that will bring the constant worry of side effects. I consider and resist and research and pray and then think “Who is this woman? Who have I become?”
And that is why I grieve. I cry for my youth, for my ignorance, for my health, for the person I left behind when I was diagnosed. She was not any better or more valorous than the woman who looks out at the mirror from me now, but she was different, and now she is gone.
I should be over this by now. I should be acclimated, but we all know that grief never truly goes away. It continues to remind you of its presence when you least expect it, and if you’re like me perhaps you find yourself at your desk with tears in your eyes while a group of students is taking a test.
Would that this knowledge made me more compassionate or offered me some sort of benefit, but I fail to see evidence of that. I look for meaning and don’t find it. I look for consolation but nothing presents itself to me. I look for progress and I blame myself for clinging to the injustice of it all, for failing to accept my suffering.
I believe there is grace in taking up my cross, but I can’t help but look behind me at that unencumbered girl who thought she understood what mysteries the future can hold.
Margaret- here is what I know about grief. It is not linear. There is no set timeline. It is sneaky, and lays in wait for you when you least expect it. And there IS NO SHOULD. The past couple of years have been years of grieving for me, for many reasons. Things are much better now, but I still get blindsided from time to time. Be gentle with yourself- the way you would be with a friend.
Amen amen. That was part of what made me realize that grief was what I was feeling – the way that it pops up at odd times and exposes new dimensions of experience.
Wow. If you swap “daughter” for “illness” you have my circumstance. I had a normal life, and a golden child, who one day suffered profound brain damage in an accident. My world and her world, like yours, will never be the same again.
I don’t know how we’d cope if we didn’t have a Catholic worldview about suffering.
I believe there is grace in taking up my cross, but I can’t help but look behind me at that unencumbered girl…
Yes.
I’m so sorry that you have to carry that cross. I agree that our Catholic worldview can transform our experience, but I am careful not to beat myself up when I get bratty about the cross I have to carry. It’s a process.
It is indeed a process.
It is so rare that someone writes simply, clearly and eloquently about the pain of losing something precious that she never expected to lose without also attempting to identify an up-side, a blessing, a learning to offset and justify the agony of the loss. We are so accustomed to the obligation to transform bad into good ourselves rather than simply allowing time and grace to do whatever work will come of our suffering. The courage to speak unvarnished truth about grief allows those of us who have also endured losses we never expected to enfold you as a fellow sufferer, to walk our own path not quite as alone as we were before you allowed hard words to land unadorned and unmitigated on the page. I’m so sorry for your loss, Margaret. It is profound and important. You are not alone.
You’re so kind, Karen. Your observation that time and grace do the work is spot on.
Karen said what I would have, if I had her eloquence. My heart goes out to you, Margaret. I’m battling some chronic stuff so I have some understanding of your experience. However, I am in awe of how strong you have been and how you have not let this stop you. I read about your trip to Africa and I’m both impressed and ashamed. God is in this, as He is in everything. Jesus cries WITH us sometimes. And know that you are an inspiration to some people, and I’m one of them.
My prayers are with you while you deal with your health issues. Your words inspire me. Thank you.
A brave and honest post. I know this road so well and face physical disability and chronic pain and illness daily. Some days, I can be heroic; others are days for the privacy of the shower, crying out “Why me?” And then in swoops grace. And I begin again.
You’re not alone Margaret. We grieve for the person we left behind. The thing I’ve learned? There’s another person evolving, no matter the age. We hurt, we weep, we depend on grace and one another and we stand up agsin amd carry on. Healing peace to you, beautiful you. You’re a gift.
Thank you, Denise. I am learning that I am not alone in these struggles, which is a sad comfort in its own way. Prayers to you.
Oh, Meg, I so understand what you are going through. I thought the initial diagnosis would be the worst moment, but chronic illness is such a roller coaster. But I can say that in my experience, once I’ve made it through each of the mega-down portions, I could see good things that came from it. Problem is: they are impossible to see at the time. So don’t be too hard on yourself. 🙂 Survive and get through this moment and you’ll see something good about it later… when you don’t need it anymore.
Also, and I do not want to be a pusher, but I have totally been where you are: biweekly blood tests, threats of even more aggressive treatment, and feeling like I was just not in control of anything. (And that stress, I’m sure, was SUPER helpful.) That was when I gave in and finally tried SCD. If you ever decide it’s something you’d want to give a shot to, I’d be there for you all the way.
And for amazing SCD/paleo recipes, check out the website againstallgrain.com. Some of the best food I’ve made, on or off the diet.
Thanks Sara! I still think often of SCD and your success on it. I am apprehensive about trying to fit it into a vegetarian diet, and I’m not quite ready to give up my vegetarian ways if it turns out that I need to. You’re not being a pusher – your counsel is wise and appreciated!
There are many unseen meanings to your ordeals. I am sure of it. I have experienced some small insights into the meaning of my life’s sufferings in the past. Your writings are one of those meanings… you may not know the impact your story and stories have on a multitude of others, but they have and will continue to change minds, hearts, attitudes… And it is perfectly OK to scream out “but why ME!!!”
God gets it. He/She has chosen you for a special, and very difficult path…. but onne you are worthy of and strong enough for. You are in my prayers for continued strength and many smiles to dry the tears. Peace and Love to you
Thank you for the encouragement, Frank. Peace and love to you as well.