Welcome to Getting Better! This is where I usually invite you to stop doom-scrolling, and to delight instead in a personal narrative essay. Last week, I offered a thumb poem, given my other digits were wrapped up in bandages. Today is a personal update that follows. Grateful for all of you & all of your messages of support that brought me joy last week ❤️
I’m back!
I’m so grateful for all of your messages over the last week. For anyone new, the TLDR is I lost all function of my hands for a few days (and most function for a few weeks) due to eczema. My joints were so swollen I could barely bend my fingers, my skin was raw and torn and pulling back under my fingernails, and my hands felt like they were on fire, keeping me awake day and night. Chemical burn type of fire.
But right now, life is good. I’m sitting in a coffee shop and twin boys (around 4 years old) are blowing kisses to their dad through the window. I just spent two hours journaling (by hand!!!). I’ve been able to care for my 1 year old on my own again this week after leaning heavily on my husband, who works from home, and my parents-in-law, who came and helped out big time for most of last week.
Turns out hands are a big help in life.
My recovery is thanks to modern medicine. Something I often resist and have tried many times in life to eat or journal or meditate my way out of needing. But this month, pills saved me. And I’m beyond grateful for that.
I’ve also been on an emotional rollercoaster because of it. Specifically, the timing of it.
My husband and I have dreams of growing our family.
We love parenthood more than anything in this world. Our boy — our first — just turned one, and we had dreams of conceiving again now.
But my health this month got me on some aggressive meds that are contraindicated during pregnancy. My dermatologist started me off on oral steroids (Prednisone) and quickly shifted me to an immunosuppressant (Cyclosporine) in the hopes of giving me back my ability to use my hands within days rather than weeks.
Relying on my husband and in-laws was not sustainable. I’m a full-time mother and was unable to feed my baby, diaper him, take him for a walk, or do much of anything beyond sit with him and do my best to nurture him with my presence. It was a gut-wrenching, helpless experience I wish on no mother.
In my eagerness to get my body back to health — for every reason, but particularly to be able to care for our baby and to be able to conceive again — I asked my dermatologist on Friday if I can taper off of Cyclosporine (that I started a week ago) given my remarkable progress. My hands are not yet fully recovered — there’s still some flaking, a lot of redness / discoloration, and some open cuts — but I can use them!
Her reply was essentially that I need to take a deep breath and not rush the tapering at the risk of getting back to where I was a week ago. She then said she’d want to transition me to another med before I taper off of the immunosuppressant completely.
This put me in a panic-despair loop on Friday night.
It’s hard to describe the feeling of being told you can’t get pregnant right now — and don’t even think about trying — when you feel so ready to welcome a new little soul.
It may sound dramatic if you’ve not been in this position. After all, it’s possible we’ll only need to hold off for a few months. That’s hardly a big deal in the bigger picture, is it? Especially if it means I’ll be healthier for it, and better to care for all of us.
But so many mothers have been here — the place of waiting, for one reason or another. It’s hard to wait, and it’s hard to shake the feeling that it’s my fault we’re waiting. Like I should have found some way to manage my eczema by now. It’s been 31 years, for crying out loud.
I know I’m not alone in this pit-stop of shame (the most toxic emotion, no??) and sadness, and I also know the path forward is not to wallow. But the whole situation is a tough pill to swallow. (Way harder than my big Cyclosporine pills.)
I’m left to choose the one path of life that feels sane: the path of surrender. My need to control everything is sure to get me nowhere that’s of use to myself, my family, or my healing right now.
But how to get to this place? I was so attached to our timeline.
Why was (let’s be real, am*) I so attached to an arbitrary timeline?
Why do I feel such a strong need to have our second baby before I turn 33 (this was my deadline)?
I’ve been telling myself that it’s because we want to leave open the option for conceiving a third child, and I don’t want to be pregnant at 35 because of “my health,” so I wanted children at 30 (my age when we had our first), 32, and 34. I used the arbitrary “geriatric pregnancy” number to support my logic.
If I’m being honest, I know this isn’t what’s driving my urgency, but neither could I pinpoint exactly what it is I’m so afraid of. And it’s time to get more honest with myself, or else I’ll pity cry myself into a hole of helplessness this week.
So I asked myself this morning why I’m so unwilling to budge even a few months on our arbitrary timeline, and the answer was immediate and clear.
I’m afraid of missing life with my children. Any at all.
It comes down to a fear of death — a fear that’s way more present in my life than I tricked myself into believing it was.
My husband and I have talked about death over the course of our relationship. I’ve read books on death. I’ve gone to talks on death. I’ve regularly meditated on death, repeating Buddha’s Five Remembrances to myself many mornings:
I am of the nature to grow old, I cannot escape old age.
I am of the nature to get sick, I cannot escape sickness.
I am of the nature to die, I cannot escape death.
All that is dear to me and everyone I love are of the nature to change. There is no way to escape being separated from them.
I inherit the results of my actions of body, speech, and mind. My actions are my continuation.
So I’ve told myself I’m not that afraid of it, because I’m willing to at least acknowledge it (unlike the anti-aging, anti-death world we live in) and superficially engage with it.
But my fear lives on.
I carry a deep fear of missing any life at all with my children — born and unborn. I’m tearing up writing this, thinking of not being there for any part of their lives. But, if all unfolds as I hope it does, of course I won’t be physically present for all of their lives. It’s a tragedy for a mother to witness the entire course of her baby’s life. So what I’m wishing for is a false reality that could never exist in our physical forms: me and all my babies growing old together, dying together, moving on from this world together in peace. I know that may sound absolutely batshit, but there it is.
The thing is, I don’t even believe in this version of life — of a life that ends with death. I believe life continues beyond our physical form, and that we’re always surrounded and guided by those we love, whether they’re here with us in the physical present or not. I believe in the beauty of death and that it is a renewal of all life.
But how can my mind find strength enough to remind me of this when the lump in my throat cuts off my breath?
My prayer this week is one of surrender and serenity. You may be familiar with it…
God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.
I cannot change my reliance on meds today, but I can take good care of my health and my continued recovery by eating food that fuels me, staying hydrated (my constant struggle), spending time outdoors, laughing with my baby and husband, reading incredible books, long form writing, and creating things that make me feel cozy. I can surrender my need to control, and trust that our second little one will join us right on time, whenever that may be. And that there is no such thing as wasted experience.
So I’m sending lots of gratitude to these two hands today, and lots of love to all my fellow waiting mothers and control freaks.
May God grant you the serenity to accept the things you cannot change, the courage to change the things you can, and the wisdom to know the difference.
❤️❤️❤️
Thank you for sharing this, Miriam. The bittersweet beauty of motherhood for me was an excruciatingly heightened awareness of my mortality. I wrote a little about it here: https://perfectlygoodwords.substack.com/p/my-chaotic-heart. It sounds like you've had a really tough few weeks and I'm glad to read you're on the mend. I think so many women can relate too to the urgency we can feel when it comes to babies. I don't think we can rationalise ourselves out of it!
I just adore your honesty, Miriam. So glad you're healing well, and thank goodness for modern medicine. Maternal yearning is such a driving force; it's impossible to think of anything else when you wish to conceive. Embracing the unknown is never easy, I don't think, in matters of the heart.