I’m sitting in my darkened bedroom eating leftover pad thai from last night’s dinner at Monkfish Abbey. I didn’t get to eat it last night when it was hot, and fresh, and being enjoyed by a dozen friends. I had a migraine.

Since I fell out of remission in mid-February the thing I’ve struggled with the most is the loneliness. When you are chronically ill you are alone a lot – in the waiting room, in your sickbed, in the drug addled confusion of your own thoughts. Chronic pain is isolating. It keeps you from connecting, even when you manage to be physically present. It isolates you from your true self, the self you knew yourself to be before you got sick. And so, you are alone even from your very identity.

The other thing which is a deep wound is the way my chronic pain impacts the childhood of my daughters. There are too many times when I have to say “I can’t, Mommy doesn’t feel good.” There are so many times when I have to shut down from the frolic and noise of two elementary aged kids at play. Too many afterschools where Mom is obviously gritting her teeth and just getting through until Dad comes home. What does this communicate to my children about their value? About my deepest desire to be with them and to enjoy life with them? I am so sad over what my kids are going to remember of our times together. How many “I love you’s” do you have to say to counteract such long periods of illness-induced isolation from your mother?

Then there is what this is doing to our marriage; the way Paul and I are ships in the night, barely seeing one another in the passing between dinner and me retreating to sleep. You know the joke “Not tonight dear, I have a headache?” What happens when that’s real, and chronic, and no longer funny? And what does a spouse do with all the resentment that creeps in when he works a full day and then has single-parent childcare duties as well because his wife can’t bear to be under the lights one more minute. How lonely does he get, typing on his laptop besides his wife, her head wrapped in ice packs.

Yesterday, I went to the neurologist again. She not a cold woman, but she is, above all, a scientist, and I knew crying in front of her was not going to help us come up with a clear headed solution. I managed to pull myself together in the 20 minutes I waited alone in the exam room. We came up with a new course of action, part of which can’t be inacted for two weeks. “Don’t give up.” She said, “We’re not out of options.”

A spider’s thread to hold on to.

15 Responses to “Leftovers”

  1. Rachel Says:

    This week in the Jewish lectionary we’re reading from a part of the book of Leviticus which focuses on the states of taharah (usually translated “purity”) and tumah (usually “impurity”) and how a person who is sick (has recently given birth, e.g., or is afflicted with leprosy or something like it) cannot enter into the Temple, cannot approach the presence of God.

    I’ve been working on reading those passages descriptively, rather than prescriptively. Which is to say: it’s not that when we are ill we are forbidden from being in holy community and connection with God, but rather that when we are ill we are often unable to be in community and connection. We’re hurting too much. That’s one of the things that tumah means.

    So your post resonates deeply for me today, and I hear your pain, and I am sorry. I wish I could sit by your bedside quietly in the dark and hold your hand.

  2. aola Says:

    another one of those things that is just beyond my understanding???

    It shouldn’t be so.
    There should be something that helps.
    Where is the grace and mercy?

    I’m sorry that you live with so much pain, it totally sucks.

  3. Jennifer Says:


  4. Beth Says:

    Thank you for sharing your pain so honestly. Sometimes a spider’s
    thread is enough.

  5. StCasserole Says:

    I’ve read your blog for years now. You were one of the first I found to read.
    I keep you in my prayers because I know you suffer with migraines and because you are so easy to love. Many times when I’ve needed a jumpstart of my heart, I read you then marvel at your creativity. You encourage me even though you don’t know me from Adam’s housecat.

    I’m sorry that you live with chronic pain. Many people never feel good and hurt all the time. Not the easy way to live.

    Thinking of you and grateful for you.

  6. Beth Says:

    Bless your heart. I hope that you hang in there and believe that you can and will become a better and stronger person for this. No one wants to see a person hurting or alone, but our darkest hour can be our brightest dawn. I send many blessings your way and want you to know that you are loved ( in the sense of a higher source). Believe in what you can give to others and what is sometimes our greatest wounds are our greatest and deepest present to others. I share with you some of pain of lonliness, but there is meaning to all this. We must never give up! You are loved. Peace be with you.

  7. juniper Says:

    hugs, dear one. but gentle ones, that wont cause more ouchies…

  8. Sue Says:

    I’m so sorry. I had not seen a headache-related post here for awhile and hoped that it was a “no news is good news” situation.

    I was diagnosed with Chronic Daily Headache about 18 months ago, so your post strikes very close to home (except that my children are grown). How I would love to file my icepaks under “Don’t need them!” and leave them in the freezer for a few months.


    I hear ya. Hang on to that thread.

  9. Shan Says:

    I just happened to check on your site (been meaning to for a month…) as I was telling my boyfriend about it… and was soooo sad to read your post. I know how hard it is!!!!!! *BIG HUG* Hang in there!!! I know how horrible the clusters are and how lonely it can get. I just came out of a set myself and know the “mommy guilt” that we mom’s feel. Mine cause hemiplegia, so I can’t carry or hold Ian, lest I drop him (my hands just let go). Yet, I know that as I explained it to him, he understands and respects my limits. He knows mommy will be better, another day. My mom had the horrible clusters like yours, and I ended up have some really, really sweet moments with my dad, as he was doing the cooking & cleaning. He even made me my 10th birthday cake, as my birthday happened to be in the middle of a cluster! I will never, never forget those times with my dad. The girls will have their own memories of times with their dad, as well. Additionally, you will cherish the pain-free times with your family even more, and not take them for granted. In the last 2 years, I’ve found blessings in the midst of pain as life is never what we expect it to be (I am constantly reminded of this). We never know God’s purposes…

    I’ll be praying for you!!!! “Dr Shan”

  10. Karla MG (Kmamommy) Says:

    Oh Rachelle, when I asked about your headaches in response to your Habitude blog, I hadn’t read this yet! I’m so, so sorry that remission isn’t yours to enjoy right now. Like St. Cass. and others, I’m holding you close in prayers! When I get home from work, I’ll light a candle for you, dear one. Is soft vanilla okay, or would lilac be more soothing to waft your way? I’m down to 2 Imitrex cartridges, so I have to bite my lip and order more, despite insurance not covering them till my deductable is fulfilled (which it isn’t). Hmm…maybe another ER trip will fulfill it?! :( Can’t remember if you’ve tried DHE (IV or injection)? Ask your neuro, if you haven’t. Also, it’s hard to walk to the chiro and LMT when you’re hurting…do they do housecalls? I know of some who do! There’s no crime in asking for what you need! And on the kids/hubby piece, ITU and I don’t have any answers, but more prayers and hugs! I’ve overheard my kids asking daddy “why’s mommy always sick? why can’t she stay home (or not work nights), why is she in bed when we get hom?” It tears your heart to shreds. Keep praying, hang in there, don’t give up, and hold tight to that spider’s strand! Remember, it’s skinny, but super strong! HUGS! –K

  11. Kel Says:

    as a regular reader of your blog, and a chronic pain sufferer, I’m sad to read your honest and raw account of what it’s like to live with pain as a constant joy crusher

    being absent, although there, is the hardest part
    for you
    for those you love
    and those who love you

  12. Susan Young Says:

    Much love to your heart, your girls’ hearts and Paul’s heart.

  13. anj Says:

    This past month I have been realizing part of my task has been to internalize the new me; the me that has a chronic illness, is in chronic pain, and yes, is very isolated at times. I keep thinking I am the me before. And I keep wondering has my essence changed? Do I still smell the same to those who love me? I used to smell of physical strength, what does weakness smell like now? Your post and honesty brought tears to my eyes, and relief to my heart. I, too, grieve over how this impacts my sons adolescence. My youngest does not remember the healthy mom who could play. I am sorry that somehow the universe screwed up and you got migraines out of it.

  14. Christy Says:

    I’m so sorry Rachelle - I was hoping as well that no news was good news. It must be so frustrating and lonely and difficult.

    I hope that some of the neurologist’s options work. I will hold you in the Light.

    Thank you for being so honest. I wish it didn’t hurt so much.

  15. Rachelle Says:

    Thanks all for your love and support. It’s a lot of work, this being a person of pain, and you are helping me figure out how to do it.