A very dear to my heart woman of wisdom, strength, and humor told me this today.
So many people-an inordinate amount actually-I know and love are going through such intense heartache and grief and fear right now. This very second as these words are being typed.
I’m overwhelmed by the resilience of the human spirit. That spirit that, although weary and gripped by fear and pain, and questioning EVERYTHING, that sometimes feels like it just cannot take one more breath, somehow, keeps going. And going.
Many of my clients ask me how to hold it all together while surviving the grief and loss. It saddens me that they believe they have to hold it all together all the time. I mean, how is a human whose child just died or has just miscarried or found out some horrendous news about the health of a child or themselves or another loved one (insert any heartache here) supposed to hold it all together? And what does that even mean? Because, really, trying to hold it all together can make it even more horrible than it already is. It can wipe that resiliency right on out in my experience as a human and a therapist. What is this holding it all together crap so many of us think is helpful? How does it serve us and humanity collectively to consistently hold back tears, to put on a “pretty” or a “strong” face for others, to wrap our pain up in a cute little package with a fake smile on top?
For those of you who know me well, this is where the cussing begins- Because of course it doesn’t fucking serve us or anyone else well- it only creates more suffering- the pretending that takes inordinate amounts of energy, energy the grieving and suffering do not have to give, because just staying alive amidst the pain of whatever it may be takes all the energy. All of it some days. And this is why isolation can seem so necessary and vital. In isolation, holding it all together does not have to be achieved.
So let’s start honoring our grief and loss and heartache and pain with the gift of allowing it to be seen, for letting the tears fall even if you are in public and not giving a shit about appearances. How freeing it can be to not have to constantly hold it together. Maybe holding it together can be holding space for your own suffering, not forcing smiles or false words. Let’s redefine “holding it together” so that it’s more acceptable to ourselves (and others) to show up without always wearing the masks of bullshit. By not feeling like we have to sugarcoat our experience.
And, of course, I am not advocating for emotional dumping of ALL THE THINGS in inappropriate places or with people we barely know. I mean first within our own belief systems internally and then with dear and trusted friends and family, health care providers, and colleagues that we consider trustworthy. Because don’t we ALL experience these heartaches and traumas at some point in time?
So may we all begin the permission giving process of grieving out loud, teary and snotty and human or quiet and numb or dark-humored or in whatever way is YOUR way.
And to each and every one of you out there right now, please know I am consistently sending you compassion and healing energy for peace and resilience and that I am taking those inhales and exhales right along with you.
As my kids have grown into teenagers and young adults, I realize the joy I experience when having meaningful and in-depth conversations with them- I marvel at how these same people, who I sometimes still see through the lens of early motherhood ( you know, that they are still little humans who need me to wipe their tushies), are truly their own people with their own views and critical thinking skills and abilities to communicate and to engage in healthy debates.
After a 2 hour conversation covering numerous important and meaningful topics – no topic off-limits- with my son yesterday, I fully experienced the magic of seeing him as the young man he is becoming. The honesty and ability he has to clearly express himself and his thoughts and feelings, the research he does to make sense of humanity and to figure out for himself all of the different perspectives that resonate with his innate sense of logic and kindness, hearing his internal processes that guide him to make informed decisions about his belief/value system, and his willingness to listen and express curiosity is truly heartwarming and melts my soul.
The cognitive dissonance that I am continually making space for and accepting is that he is still my “baby” AND he is absolutely his own individual person separate from me. ( And smarter than me in many ways)…It’s that push/pull inside of wanting to hold on and knowing I have to let go- there is a song ( can’t remember who sings it) about holding on loosely. And that is the place that is hard and makes me happy all at the same time. And that is what my young mom self could never begin to imagine- even though I knew intellectually that obviously my kids would grow up. But knowing this and living out this experience is different. It’s a good weird.
Just like pretty much everything in life that continually changes. And changes again. Every relationship- especially our relationship with our own selves.
I have always seen my kids as my greatest mirrors and teachers. Parenting has a tendency to really shed light on who you are and where you need to be intentional on how you need to grow and stretch as a human to role model and practice embodying your highest self. This is a challenge- all the time! And the privilege I have to be their mom – words cannot even express or do justice to this gift.
So I will be intentionally practicing holding on loosely to my baby who is actually no longer a baby and hasn’t been in many years. I am already looking forward to all of our conversations yet to come about ALL the things-hearing his perspectives and experiences with that sense of wonderment that warms me. So maybe by the time he leaves for college in just a couple of years I will feel more comfortable and ready ( like I really have a choice…) And I will also firmly grip all of the memories of raising him, every phase, as I allow myself to enter into this shifting space of motherhood.
So may we all give ourselves ongoing permission to hold on loosely to whatever it is that we find ourselves firmly gripping. And the self-compassion when we find it so difficult to do so.
Yesterday was a HARD day. A day filled with all the pains. The pain of being a compassionate, empathic human who loves her work AND recognizes how emotionally and spiritually painful it can be -as well as the physical pain of just sitting in my therapy chair can be- who knew that holding my body in that upright position for hours could take such a toll on my neck, shoulder, and arm? And my quirky arm is supported with a comfy pillow the whole time.
This is why I am in a deeply committed relationship with my heating pad. We are in love.
The emotional pains of being a mother were loud yesterday. A mother who wanted desperately to step in and nurture and protect and who had to hold all the space internally and externally without hovering or over-stepping. This is not natural for those of us with maternal instincts that are such driving forces – surging, powerful forces that flood us.
Physical pains of nerve damage shooting down from my neck all the way through my left fingertips- ALL DAMN DAY. Muscular pain in my left scapular area ( but YAY that I have feeling there again-sometimes) from being able to use my weights and therapy bands and practice yoga again.
The pain of experiencing enraging feelings at our healthcare system as I was listening to a friend’s horrible and scary experiences with our “health” care system that did not seem the least bit interested in her concerns and that included a health care provider actually laughing at an important and reasonable question she raised. This friend is a strong woman who knows how to be her own advocate so at least there is that.
So isn’t it wonderful that today was, to coin my husband’s words, a recovery day. A day that started with a massage from one of the most incredible humans with the most magical hands – who knows chronic pain inside and out. Just being on her table before the massage begins fills me with a sense of peace. She always ends the massage with a gentle reminder to take slow deep breaths and to remember how relaxed my body feels at that moment so that I can have that imprint to call on when I need it- because she knows I will need it multiple times before our next session.
And then I got to have lunch with one of my favorite people at one of my favorite restaurants. Yummy and nourishing food for my body and soul. You know those people who you feel safe to be your authentic self with, those people who are so real themselves that they allow you to be? Hang on to those people. Treasure them.
And to top it all off, I had my second acupuncture appointment with another special and smart human I have the pleasure of learning from and connecting with as she is providing another healing tool as well as offering such compassion and warmth on every energetic level. She said something that still has me processing – that struck me in my core- That it took my body paralyzing me to get me to listen to it- to actually slow down and pay close attention and reset. This perspective – Another one of my multiple surprises on this journey of establishing this “new normal” and how to live in a more peaceful way with MS.
So she puts in all these needles everywhere- and as I am lying there feeling all of these zings ( not the painful MS Zings- these are very different zings), my entire left arm- starting way up in my neck and shooting all the way down through my thumb and fingertips is pulsating and it feels very loud and strong- painful but in a new way that I am having a difficult time finding the right way to describe with language.
And this goes on and on and I am breathing deeply into it and focusing my mental energy on telling myself that my body is safe and it does actually love me AND that it can hurt me AND still be safe. And the whole time all of these weird feelings in my arm are doing whatever they are doing. So then the beautiful acupuncturist comes back in and I’m describing what’s happening to her- and she lets me know that this is wonderful feedback- that this is my nerves “waking up”… music to my ears. That this is good pain. And the way that she explains it- with her lovely voice and from a wealth of experience- makes the hopefulness just bloom inside of me. And please know that I am gratefully aware of how fortunate and privileged I am to have the resources to be able to experiment with these healing modalities.
So here’s to the ongoing flow of hard days and recovery days and becoming more intentional about conserving my energy and honoring my body so that it may continue to operate in the complex ways it needs so that I am in balance and alignment with myself, which ultimately empowers me to keep showing up for others.
And so may we all continue to work on finding that physical and emotional and spiritual alignment in whatever ways we feel convicted to do as we find our own balance. And may we give ourselves ongoing permission to come back to ourselves as many times as we need to do so.
My husband and I just celebrated our 23rd wedding anniversary. Just writing that sentence takes me back so many years. To those very young college kids from two vastly different backgrounds and places who met by happenstance one summer day in 1993. At our summer jobs in a Steakhouse. A hostess and a dishwasher.
Who chose to date each other long-distance during our last 2 years of college. Before the invention of emails and cellphones. We’d write each other actual letters and set up “dates” on our landlines maybe twice a week because of the high cost of long-distance calls. Yes- that long ago. My dear dad generously donated his airline miles to us so we could see each other every now and again.
We chose each other after graduation when we both decided to move to my hometown. Well, I made it clear that I would not EVER live in a COLD place EVER.
We chose each other on a very cold Saturday in 1997 when we said “You are my beloved and these rings consecrate us to each other” and then celebrated in typical Jewish Wedding Style – so much food and dancing and singing. People still tell us that our wedding was one of the most fun experiences- Thank you, Mom and Dad!
We have continued to choose each other all these years. Years of learning about ourselves and each other ( because what 24 year olds really know who they even ARE, let’s be real), and conflict, and annoyances, and figuring out our love languages( and how to relate and receive love and “speak” each other’s languages), and acceptance, and laughter, and raising children, and agreeing to respectfully disagree, and silences, and forgiveness, and talking, and compassion, and humor, and hugs, so many hugs, and PARENTING ( parenting is the BEST of times AND sometimes the WORST of times – you know it’s true), and affection and kindness and gratitude.
We learned to choose to let ourselves have independence and autonomy and to grow as individuals. To be whole humans – not buying in to the ridiculousness fictional notion that we are responsible for making each other happy. Disney movies are not always our friends, y’all…We figured out along the way that it’s up to each of us to provide fulfillment and find purpose and meaning for ourselves and to support each other’s paths. This has been an evolving process over years and years AND it will always continue to be evolving-I am the first to admit that the struggle has been real for me-So many limiting and false beliefs I had to unlearn.
This man that I am fortunate to call my husband shows his love through his steadfast strength and strong devotion and protection, his acts of endless service on behalf of me and our family. Through all sorts of different caretaking ways that I never even thought would be a part of our story. I am continually overwhelmed and grateful for his deep sense of knowing what I need to take care of myself even before I do sometimes-his ability to be the reasoning voice of suggesting rest days and staying in my pajamas days and not over doing it days and conserving my energy days. MS has effected him just as much as it has me- just in different ways. Ways we are still discovering and processing.
This year we chose to try a Near/Far Infrared Sauna at a lovely local spa place. Not only do some MSers use this (with caution) to manage pain symptoms, and to sweat and for relaxation, most middle aged folks- especially hardcore athletes like my husband- have some kind of pain at all times somewhere in their aging bodies. If you are interested in learning more about this type of healing modality, Google it!
As much as I enjoyed being in that sauna, I noticed after about 20 minutes that my quirky arm was making itself known very loudly- all the numbness, tingling, weakness that let’s me know my time is UP. My legs were also becoming symptomatic. And I was barely sweating- Google MS and Thyroid issues if you care to learn more about this issue. So anyway, I got out and put a cold towel around my neck and sat down. I don’t think I would have been able to drive myself home- so fatigued and relaxed at the same time. So having a home infrared sauna would be FABULOUS!
The rest of the Anniversary day was spent on the couch binge watching Curb Your Enthusiasm together. We Love Larry David. And each other.
Sometimes there will be days where every single brave human who sits on my couch will be grappling with the same exact underlying issue. Today was one of those days- I call them theme days and marvel still at the universal commonalities that create internal suffering- and I choose to use them to check in with myself because those theme days typically resonate strongly with my own perfectly imperfect humanity.
Today’s theme was how we outsource our power and our inner knowing. We struggle with getting quiet inside and listening to how our body feels and tolerating distressful emotions. We jump into our heads ( and over-thinking, judging minds can be very scary places) to immediately escape into the familiar territory of intellectualizing and over-analyzing and creating fiction and stories about ourselves and others that typically do not serve us well yet trick us into believing we have some sense of control. When in reality, if we can learn or re-learn to come back to our own selves, to sit with the discomfort, to stay with ourselves, to practice curiosity, to use our breath to send calming messages to the places inside that feel tense or stuck or scared or enraged or bereft AND sometimes it may be ALL of these feelings at the same time- only then do we actually have the ability to connect with our own power, our own intuition, our own relationship with listening to ourselves-which ultimately leads to existing in this difficult and beautiful world in a way that increases peace and decreases suffering. And knowing we have the power to practice this and to be in a more trusting relationship with ourselves- that is choosing peace- even when our external world is full of strife and never-ending to-do lists, and ALL the life circumstances that will occur- How profoundly empowering! And making intentions to honor our own internal wisdom in whatever ways that make sense to us- that is one way we can heal from whatever it is internally that creates the turmoil, the panic, the shame, the distrust within.
I realized I was stuck in the story that I was telling myself about J’s appendectomy. That I failed him because I listened to his pediatrician these last 2 years- who really missed the mark on taking care of him and listening to him. I trusted this doctor. All the “SHOULDS” that have consumed me since it was confirmed that this was the source of his stomach pain all this time. I have apologized to J and he graciously accepted my apology for not taking him to a specialist or demanding certain tests ( I am not a medical doctor so I really did not know to do this). So today I chose to go inside myself and give my self permission to release my mom-guilt. To allow the false narrative that I am a bad mom to move through me and outside of me. To come back to my own inner knowing that I’m doing the best I can and that I can make mom-mistakes AND still be a damn good mom who loves her children ferociously. The sense of relief and freedom I experienced was immense and immediate.
So I am full of gratitude for the work that I do and the people who trust me with their stories. Who remind me that we are all in this together- this interesting and challenging and lovely and scary reality of being a human being.
So may we all allow ourselves to embody ourselves with curiosity and compassion. And may we all practice getting more comfortable with recognizing and listening to our intuition again and again and again.
Silent tears streaming down so many different faces, sobbing souls so loudly suffering, faces so contorted by pain and shame rendered unrecognizable, uncontrollable violent shaking, vomit spewing from bodies when fear would not let them speak words, blood seeping through clothing from self-harm, disassociation happening right in front of my eyes, suicidal thoughts and intentions, these are just but some of the experiences I have been a sacred witness to in my work with humans over the past 20 Plus years. Humans coming to me with story after story after story of religious abuse and trauma. Humans attempting to make sense and peace out of an entire culture that produced such paralyzing shame and self-hatred- all in the name of God.
As a Jewish person, it’s taken me a very long time and a lot of listening and asking questions and doing my own research to even begin to absorb the ways in which religion, especially the fundamental and evangelical kind, can create all of the descriptions of fear and pain listed above. I have been on the receiving end, beginning as early as 3rd grade, of knowing what it feels like to be “other than” this type of Christianity- slapped in the face by a big 4th grade boy after my mom came to school to light the Menorah during Hanukkah, being told I was going to hell more times than I can count, being judged and shamed and questioned and proselytized to over and over and over ( many times in school by the school- ever heard of Separation of Church and State?) again. Watching my kids experience ( other than the physical ridiculousness- as far as I know…) all of the same stuff. All of that is a story for another time.
One of my numerous clients who was raised in this religious environment of shame and anxiety that produces a disembodied sense of self and humanity shared a podcast with me recently- Jamie Lee Finch on The Liturgists. And then, because I am a seeker, I found a different podcast called God is Grey hosted by Brenda Marie Davies, that further enlightened me on the depths of what so many of my clients speak about who are working through their struggles with religious abuse and trauma. Their struggles with their own humanity.
The Religious Trauma Institute is another resource that provides a wealth of knowledge and understanding- even though I have seen firsthand and have helped people through their traumatic religious experiences, it was always through a lens of my own, vastly different religion and relationship with the divine. Only recently am I able to begin understanding their struggles in a way that is more informed and using the same language- and as we know, words are powerful. So powerful that they can create such torment and fear and self-loathing when heard over and over and over from church leaders – the very same church leaders and youth group leaders who may be their offenders – offenders of sexual abuse. Offenders of emotional abuse.
The very same leaders who may be sending such strong messages of harsh judgment. The harshest and scariest kinds of judgement for being a human being. The same culture that promotes a sense of disembodiment from self. That appears to shame you for having your own intuition and thoughts and feelings.
I have cried in my office more times than imaginable with parents who basically send the message to their children that depression and anxiety and suicide is seemingly preferable than accepting that their children are gay, or have had sex, or are questioning these things, or questioning their own relationship with God, basically just humans – you know- being HUMAN. Using critical thinking skills. Being a sexual being- which is – you know- HUMAN.
As I am writing this, I am having to slow my own breathing and work through my own secondary trauma of seeing this firsthand multiple times and grieving with my dear clients. So much grieving and pain. Oceans and oceans of grief and pain.
I have had to work through my own rage to be emotionally available to hold space for all of the oceans of grief and pain that these humans have endured all in the name of God- or rather, their church.
I have been fortunate to see the reconstruction and the becoming and the embodiment of self that happens when the brave and scared and sad and lonely and traumatized humans begin their journeys of making peace with themselves and all of their very human parts and their personal relationships with the divine. When they give themselves permission to offer themselves compassion and acceptance.
I could write about this for hours.
That would not serve me well because I need to go sit quietly and breathe and allow these feelings of grief and rage to flow through me.
I encourage you to do your own research if you are interested or moved to do so.
May we all become who we are meant to be and already are and may we all know that we are worthy of love and acceptance and belonging- to ourselves and to each other.
Ever since my last oil change- when the service tech forgot to reset the thingy that makes the Maintenance Required sign go away- I have been reminded ( and at first quite annoyed) that maintenance is required. Instead of going back to the dealership and having them fix it, I have chosen to let it be a constant message of how important maintenance really is- human maintenance especially. I’ve started to take a few minutes right when I turn on my car ( because there the message is) -before turning on my music- to check in with my own needs for the day. Some days that includes processing ALL THE THINGS that have happened since 12/15/19.
J’s suffering for way too long before his appendix finally said, “ENOUGH!” Thinking of that Sunday when everything happened so fast and ended with an emergency appendectomy- OY VEY the feelings that flood me. He’s taking the first of his exams today that he missed before winter break. His confidence in himself and his humor and realism are traits that will serve him well and to say that I adore him is an understatement. His hugs are life-sustaining. His smile is heart-melting.
My own surgery 4 days after his ( exactly 3 weeks ago) is kind of a blur- which is absolutely fine with me! I do know that being able to walk outside with my dear friend from the moment I got home from the hospital was the best way of healing, physically and mentally. Our walks and talks are another life-sustaining necessity. And my family’s devotion and love and humor – all so much a beautiful gift. Spending time with my dear daughter while she was home – no words to truly describe that privilege- actually, I wrote a whole blog post about it so there really are lots of words!
My husband, who loves to see me laugh ( even though it hurts while recovering from having your neck cut open), made sure we watched a lot of Curb Your Enthusiasm – nothing like Larry David to bring all the belly laughs!
On my first lunch and shopping outing with O and our friend exactly one week post-op, being visited by the WTF Fairy as my left ovarian cyst was rupturing – nothing like being in Marshall’s with all the good deals and really realizing something ELSE might be wrong….Going to the GYN for that fun vaginal ultrasound the next morning to receive confirmation from the DR that it had indeed ruptured- I refused to let the feelings of defeat and despair overtake me. I acknowledged them and let my tears flow and released them. Then I met my dear hubby for lunch at my favorite Thai place and we just sat together eating after he held me. And then walking with my friend that same afternoon- thinking as long as I can walk outside, I can be ok.
And then learning there actually was some cancer in my body- still processing that one. And so grateful it’s gone. And so angry at Cancer itself on behalf of all the suffering souls.
And just being in this world where Anti-Semitism is existing very LOUDLY and our political culture is so filled with hate and blame instead of solution-focused it makes me feel physically ill and ashamed for humanity (like I need anything else to create those feelings). And Australia. And all the other multitudes of sadness and pain that all humans live with inside of themselves that we will never know.
At the same time-It has been an excellent week- first post-op strength training in the books! Gotta keep that quirky arm ( I found a better word than ‘bad’) moving and strong so it won’t dislocate itself! Have to keep all of my muscles as strong as they can be to manage my MS both physically and for my own sense of empowerment while living with this disempowering disease. Yoga is next for me to add back in-so looking forward to that! As well as my first Post-Op MASSAGE. Currently counting down the hours. And also looking forward to starting Accupuncture next week. And playing Mahjong with my friends!
1/7/20- My first day back at work- I was SO EXCITED driving to my office -a space where I feel so connected to MYSELF- in anticipation of seeing my clients and hearing all of their own WTF stories and sitting in silence and breathing with them and asking the hard questions and witnessing their tears and laughing with them about the absurdities of being human. And again today, back at work with different clients engaging in that same practice of connecting and honoring each lovely person’s experiences and discoveries and, as one wise and wonderful human said today, “reckonings.”
So I am owning my own high maintenance self and all that it takes to keep myself surviving and managing and doing what is necessary and adds value.
And I will thank that service tech the next time I see him (hopefully I’ll remember to actually take the van in before running out of oil since I won’t have the typical reminder…) for providing me with that needed reminder. That reminder that was initially an annoyance that then became a surprising beacon of guidance. That annoying reminder that I eventually adjusted to – kind of like difficult circumstances in life that present themselves in the most frustrating ways.
May we all recognize that we all need and deserve our own maintenance- in whatever ways we decide and that continue to serve us well. And may we all remember that we have the abilities to adjust to new and challenging realities. And may I remember to get my oil changed in a couple of months for real.
Post-Op appointment today with my endocrine surgeon. I was SO excited to hear that I could resume normal exercise activity. I was staring with happiness and vanity at my scar in the mirror ( before having the new flesh-colored tape put on) when the words, “And now we have to talk about the pathology” were spoken.
Y’all. What pathology?!
And this begins the story of how having an MS flare over the summer led to a non-regularly scheduled MRI that showed that my right thyroid gland was being an asshole and trying to choke me by compressing my trachea. I just thought my swallowing and weird -feeling- in -my -throat issues were one of the gifts of MS. Because those can be typical symptoms. The huge lump growing out of my neck was something I was so used to because it has been there since my Hashimoto’s Thyroiditis was discovered back when I was 40. I guess I wasn’t vain enough to notice that it had shifted and grown even bigger….
Anyway, Surprise Surprise: I actually did have a very small 2 millimeter “baby cancer” carcinoma. Too small for the fine needle biopsy to even find. So small that, as the surgeon said, “ You kind of got a 2 for 1 because the treatment IS the total thyroidectomy.” More on that in a minute.
After his multiple reassurances that I do not need any further treatment- no radioactive iodine treatment which is standard for bigger thyroid carcinomas- and that it absolutely had not metastasized ( way too tiny) and was definitely not in my lymph nodes- I actually laughed. Because this could have been a different story. A story of another Fuckening.
I laughed because I have MS to actually THANK because it’s the reason this was found so very early. It would have certainly been found this year with my regular old MRI- but it could have been bigger and created more problems. Can’t even process all of that right now- and I don’t really have to!
As my son said, “ Now you can’t complain that you have MS.” I called bullshit on that very quickly- as we all know- We can be frustrated AND grateful AND overwhelmed AND joyful all at the SAME TIME.
Back to the interesting part about having a total and not a partial thyroidectomy: initially, the surgeon had said we might just want to do a partial on the right side because that part was the rude part. This is where listening to your GUT and trusting your intuition comes in. I immediately said that, knowing my body and the way it likes to attack me somewhere, I wanted the WHOLE thing OUT because otherwise the left side would just start growing and then we’d be right back here and he’d just get more money for the second surgery. So THAT was the side that had the baby cancer- my “good” part of the thyroid. The part that may have been left in if I did not insist vehemently that I wanted it ALL GONE- and which he was completely understanding about. He hugged me with such warmth and kindness today. Surgeons are human, too.
So, what a day it has been. A Good Day. For many reasons. Thank you, MS. Said with actual thankfulness and not sarcasm.
May we all remember to listen to ourselves. To check in with our bodies, spirits, and minds as we travel along doing the best we can, learning how to be our own experts.
As I was starting to write this, my dear dad reminded me of my math issues and said it’s actually their 51st anniversary as they were married January 5, 1969…at least I am decent at writing and being a therapist.
So today would have been the 50th (51st) Anniversary of my parents. It technically still is even though my mom is not here in this realm with us in physical form.
Since I can’t give them a traditional anniversary card, I was pondering over how I can honor them and what this day means for them.
So I am choosing to write them individual letters.
Happy Anniversary- it seems unimaginable that this day 50 (51) years ago you and mom decided to choose each other. Although I was not there, I have been fortunate enough to hear all the fun stories from y’all and our family and friends. You were so very handsome and hopeful and happy and every picture shows it clearly. The honeymoon story in Gatlinburg is one of the funniest and I can hear Mom’s laugh ( who couldn’t?!) when telling the story about the chimney flue.
Your relationship with her and your ability to express your love for her was a gift, not only for her, but for your children as well. You embodied the act of wholehearted love. And it benefited all of us. So Thank You.
When the first cancer diagnosis came, there you were- ready to fight alongside her- and helping to take care of me and O during that whole bed resting month when J was trying to come out too soon and M was traveling far away for work. What a scary time and yet I remember the laughter,too.
And then just a few years later, when the second cancer came to rock our world completely, there you were, doing every single thing you could to support and help and advocate for her. It’s so hard to even write about it- but know that I was a front seat witness to your remarkable relationship with her.
So on this day of reflection- please know that your generosity of heart and time and spirit and resources- not only within your marriage, but within your whole family- will continue to be seen and celebrated and respected. As my mother’s daughter, I know she felt your loving kindness and that she is still feeling it and smiling. And loving you right back.
I love you,
Can you believe it’s your 51st Wedding Anniversary?! That is a lot of years. Thank you for showing me and talking to me about what marriage really is – not some bullshit Disney princess fantasy- but that it means choosing each day to be patient and loving and frustrated and understanding and giving up the notion that it’s better to be right. Your calm and peaceful energy was such a complement to dad’s and I saw how it played out in the energy of your relationship.
I know you have been with us in a different way for these past( almost ) 9 years. A day does not go by that you are not missed. We love to go to your house and look at all the old pictures. I see you in myself and in my children- and in Dad.
How proud of him are you that he is FINALLY learning to put all of his things ( keys, wallet, phone) in THE SAME PLACE?! I know you are.
The legacy you left ( and are still creating) is profoundly and deeply felt by us all. The love you poured into all of us continues to benefit us and is a powerful resource from which to pull from on the days we need it the most. And Dad does a beautiful job of expressing this during his annual toast at Thanksgiving at your house. Your effusive warmth and laughter is with us in that house and in the homes of each of our hearts. I carry it with me always. So thank you.
And even though anniversary celebrations change when one person dies, know that I celebrate you and dad and the many gifts your relationship created.
Around the first of every month, for the past 16 months, I find myself reliving THAT day- the beginning of my MS story. The story that I am still creating and that already has so many chapters. The story that I still sometimes wake up and my first thought is, “But I thought it was just a pinched nerve from that kettlebell workout.”
September 1, 2018
Woke up in a Nashville hotel to later celebrate the marriage nuptials of my cousin. Thought it was weird that I couldn’t get my left arm to “wake up” – Was it a pinched nerve from working out? Was it the terrible traffic-y 6 hour car ride to Nashville the night before? Did I sleep on it wrong in the hotel bed? Meanwhile, I’m waiting for my kids (teens) to wake up to meet my dad downstairs for breakfast- my husband was also out of town at his cousin’s wedding( Labor Day Weekend is a popular time to get married!)..
I got on my yoga mat( I bring it EVERYWHERE) to practice some yoga to see if that will help. First sun salutation, I fall flat down on my face because my arm will not support me. Try it again. Same thing.
I finally rest on my mat and really pay attention to what is happening. I notice it’s like pins and needles all up and down my left arm. And that I can’t really make a fist with my left hand. And I am left handed. Must be a pinched nerve.
Take a hot shower- become extremely weak- like nothing I have ever felt before weak. I look back now and laugh because, as most MSers know, hot showers/baths exacerbate MS symptoms. Never a good idea in the middle of an attack.
Finally get dressed after resting from just taking a shower- Y’all- anyone who knows me knows I am high energy. What is happening? I’m pissed at this point because we are ready to explore Nashville before the Wedding.
I have to get my kids to open stuff for me- I really didn’t even say much other than that I might have a pinched nerve or something, no big deal.
Every chance I could get that day, I sat down. I rested AGAIN before getting ready for the wedding.
Attended the wedding and enjoyed spending time with our family- however, this was also a very emotional time for our family because one of my cousins was not there with us. She had just been diagnosed with a very SCARY medical issue and was recovering from a craniotomy. Yeah. So lots of tears. And fear.
I went to bed ( finally) and just hoped all would be well the next morning. The joke was on me.
It took all I could do to get out of bed, dress myself and get in the car. My daughter drove us the whole way home. All I wanted to do was take a relaxing hot (haha) bath in my lovely bathtub at home. Which I finally did later that evening once we made it home sweet home. I was so confused as I lie there in that bathtub. Why was only one side of the water working?! What was wrong with the water faucet that was making only the left side come out hot?! Why was my entire right side wet but not heating up? I’m embarrassed to admit that it took me quite some time to realize that it was not the water that was not working correctly- it was ME. I tested the dripping water with my left foot-HOT, then I tested it with my right foot- wet but… nothing- zero temperature sensation AT ALL. I sat in that water and really paid attention. My entire right side of my body could not feel any temperature sensation. My left arm and hand were so weak and tingly. I guess a pinched nerve can do this?
I somehow manage to crawl out of the bath and into pajamas. Go to sleep. You may wonder- is she scared? Is she thinking of calling a Dr or going to one at this point. Nope not really- insert my typical under- reaction to my own health issues here. All I was focused on at this point was sleeping in my own bed- the next day was Labor Day AND my son’s 15th birthday- he wanted me to make buffalo chicken dip. And my daughter and I were meeting a kind old friend who was in town at Starbucks around 9 am so that she could use her college professor-y skills and guidance to help with O’s 10,000 college essays and resume. Meanwhile, my husband had driven straight through the night to find me sitting up in bed early that Labor Day morning. He took one look at me and said, “Something’s not right with you” ( I had not even mentioned to him what was going on yet). I told him everything that my body was doing and he suggested we go to MD 360.
Did we go right away? Nope. I told him O was driving us to Starbucks and then we were going to the grocery store to get the ingredients for J’s birthday request- plus all the other food we needed. We meet for coffee and catch up – O has to deal with paying and carrying everything for me. Sweet and Smart friend was like, “ You might want to go see a Doctor.” Yep- after the grocery store maybe. While we were at Publix, my legs start becoming numb and weak. It FINALLY hits me that maybe something could be wrong. O tells me she thinks we should stop shopping and just go home. She pays and loads the car with the few groceries we bought ( it really bothered me to leave without getting all the stuff ON THE LIST!).
Get home around lunch time and Smart Hubby insists it’s time to go to MD 360 ( local emergency care). Still haven’t even seen the birthday boy that day because he was still asleep- teens….
The doctor pretty much immediately says, “ Are we calling an ambulance or is your husband taking you straight to the ER?” She thought I’d had a stroke or damaged discs in my neck so she put the cervical collar around me – I still have nightmares about that damn thing- I’m so angry because I think this is overkill and ridiculous. We get to the ER and the neurologist starts doing all of these tests and asking me over and over every 10 minutes to move my arm in different ways. I am crying with frustration at this point because I absolutely cannot make my arm work. I kept apologizing like I was doing something wrong. Like I wasn’t passing the tests! I am an achiever- I DO things- I am in control- how could I not make my arm move or squeeze anything? And I was still wearing that fucking cervical collar. So much blood was drawn- so much blood.
I just keep saying- isn’t this just a pinched nerve? The hospital neurologist says he thinks I have had a stroke and I am arguing with him that I would know if I had a stroke. He gently smiled and said something like he was glad that I thought I was a stroke specialist- but in a nice way. So off we go to have a brain and cervical spine MRI and I had a tantrum about having to leave the stupid collar on so they let me take it off for the 1 hour MRIs. When I was done, the tech said I didn’t have to wear the collar anymore- I kind of realized then that maybe it’s not a pinched nerve- but I was also starving and delirious and couldn’t think straight at all. Dear hubby meets me outside of MRI room as they are wheeling me straight to have a Head CT. At least my collar was off- YAY!
Meanwhile- in between all the waiting, the kids are calling asking when are we going to be home to make the Buffalo Chicken Dip and O is working on college essays and we are discussing them and she needs the credit card info for application fees. I do not have time to be in this ER!
Around 11:00 pm, a different- very young- looking (maybe about 14) neurologist comes in and she sits real close to me and holds my hand and says that they have discovered why I can’t move my arm. She said the MRI showed lesions on my spinal cord – right at the brain stem- and that where they are located are inoperable and cannot be biopsied. A million things are going through my mind at the same time:
I was right! I did not have a stroke!
It’s J’s Birthday….
I haven’t made all the lunches for the week yet and the kids have school tomorrow.
So what is wrong then?! What can be done to fix this? Can I go home now??
I’m verbalizing all of this but it’s not coming out right – my left arm is going crazy ( learned it was “clonus”) because I was having panicked breathing. The teenage Dr tells me to slow my breathing ( YAY for my yoga practice) and my arm finally stops slapping me in the face. My husband and I are in shock. AND that youngster Dr said I needed to understand the seriousness of taking care of myself and not worrying about the kids ( she is not a mom yet) and that I was being admitted into the hospital for further tests. So insert the Absolute Fuckening.
I stayed awake all night in the ER waiting for a bed- still not allowed to eat or drink water – just ice. Blood drawn every couple of hours- they were doing an MS work up but the original neurologist said I did not present as a “typical “ case of MS because of my advanced age and lack of brain lesions. Got into my room on the neuro floor about 6:30 am. Awesome and Amazing nurse comes in at 7:00 am- she says the Dr will be in soon to do a lumbar puncture to see what’s in my cerebrospinal fluid- I just keep asking her when can I go home and am talking a mile a minute and am dying of thirst- she says: I can tell you are a Mama- I am too- this is going to be a long road- this is very serious and I cannot tell you when you are going home but I can tell you that I know you have grit and you are going to need it- and I’m putting Ativan in your IV. Lumber puncture ( spinal tap) is so pleasurable and fun- NOT. But I have had 2 epidurals so I know the deal. They start me on tons and tons of IV Steroids- still without an official diagnosis because LP results had to be sent to the Mayo Clinic. I FINALLY get to go home on 9/5 with home health coming and having IV steroids at home. This is where it all becomes blurry and my memory isn’t totally there- can we say PTSD symptoms?
I do know that during the in between time, the not knowing time, the imagination running wild time, the time of in home OTs and PTs and nurses time( which lasted until the end of October), our family was inundated with more love and support and help and food and kindness upon kindness for which my gratitude has no bounds. And which still makes the tears flow just thinking about all of that love consistently pouring into our home.
The official call from the outpatient neurologist’s office came on 9/12/18. I was not allowed to drive ( obviously) – I had no use of my left arm and had to use a cane to walk-so my dad ( my official Uber driver) came to get me while my husband drove to the Dr’s office from work. More on the steadfast strength of my husband as that is a chapter in and of itself.
“So you have Multiple Sclerosis- it is very clear and all tests confirm. You will need to start very aggressive infusion disease modifying treatment as soon as possible because of where your lesions are- no room for them to grow- you could have been a paraplegic with this attack.” His bedside manner was severely lacking. And he is no longer my neurologist. For many different reasons.
I have no further memory of that day.
And this is the very first time I have written about it. I have told the story more times than can be counted. Writing it feels very different.
I choose to refer to my MS as Multiple Surprises – hence the name of this blog. And that is a story for another time- because I am practicing excellent self-care and know when it’s time to get ready for bed and to allow all of the emotions flooding me right now to be felt and processed and respected.
So may we all give ourselves permission to tell our own stories in our own way and on our own time.
And may we send all the compassion and understanding to all the humans struggling with whatever it is that their stories will contain.