Harder To Look Away

Sometimes it all feels so hard and heavy. And sometimes it doesn’t. Sometimes I’m in awe of my emotional resilience and ability to grieve and adapt. And sometimes I can’t stop crying and don’t know how I’ll move forward. Sometimes I am overwhelmed with gratitude for all that I have. And sometimes I still can’t believe that I am that unlucky one in a million living with this disease.

None of this is new. I’ve been writing about the same themes for the last 10 years and quite frankly, it feels as if my story has become tiresome. I am grateful to have grown and evolved throughout my almost 16 year journey with this disease and also, I’m over it.

I’m over investing so much in staying present and mindful. I’m over figuring out adaptations for simple physical tasks. I’m over hearing the clock tick increasingly loudly as I try to cram in travel and adventurous experiences. I’m over being so disciplined about exercise and taking care of my body when it just keeps wasting away.

But more than all of the above, at this particular moment, I am over the heartache that comes with not being able to protect my kids from my disease.

A few Saturdays ago, my younger son had his first basketball game after two long years. I hadn’t seen him that excited in a while. In fact, we were all excited. To be back in the gym- hooting and hollering, watching him score, seeing familiar faces- it was the mood boost we all needed.

After the game, we walked back to our car with another couple and their son. I was chatting with the mom about summer plans and before I knew it, my forehead was on the concrete, my head was pulsating and I heard my son‘s terrified voice, “there’s blood everywhere!” I looked down and saw blood splattered on the ground and on my jeans.

I’ve had plenty of falls over the years, but only two really bad ones, neither of which were witnessed by friends or family. I immediately offered reassurance, “It’s okay, I’m okay.” I looked up at my husband and asked how bad it was. “Pretty bad“ he said in his reliably familiar calm and compassionate voice. I looked back at my son whose face was frozen with equal parts fear, sadness and utter embarrassment.

I couldn’t get the bleeding to stop. As I sat calmly on the ground, I joked that there was no better company to fall in than that of three other physicians, one of whom ran to find ice, the other to grab paper towels. There were two gashes on my forehead and my knees were scraped and bloody, as I had managed to fall onto them first.

Once we determined I likely didn’t need stitches, we slowly resumed walking back to the car- the other mom apologizing profusely and unnecessarily for not catching me and my husband regretting aloud that we hadn’t been walking with our arms linked as we often do. And just as we were approaching the car, I felt it. I didn’t bother resisting. I rarely do these days. I averted my eyes as I quickly said goodbye, then climbed into the car and started crying. 

I looked at my son in the back seat. He seemed angry and still in the freeze mode of fight, flight or freeze. I told him how sorry I was. I reassured him that whatever feelings he was having were okay. I told him that I wished he didn’t have to experience this kind of pain, and that this was just our reality. And then he finally broke too. Neither of us were able to defend against the overwhelm of emotions. He didn’t want to hear anything I had to say. I didn’t blame him. As my husband quietly drove us home, all I kept thinking was how is this my life.

When we got home I showered, washed the gravel out, cried some more and then did what I’ve learned is one of the few things I can do to prevent the heaviness from crushing me- I reached out to others to hold it with me. I sent a couple of ghastly photos to my sister and my close friends. I sat there for a while in my bathroom, texting, sharing, processing, wondering if I’d have scars, all the while uncomfortably aware of the rational and logical questions I knew I’d have to confront on behalf of myself and others. Are my days of walking short distances independently with only a cane over? Was it time to officially transition to the next level assistive device? Where is the line between being resilient and motivated to do what I can for as long as I can and being stubborn and foolish and in denial?

I was angry that yet again with this disease, I’d been forced to stare at something I desperately didn’t want to see. And now I had no choice but to see it literally every time I looked in the mirror.

By the next day, after having shed the majority of my tears, we pretty much returned to our usual baseline. I sat in the backyard with an ice pack to my forehead, watching as my younger son played basketball and my husband made pizza. As I listened to the classical music coming from my older son’s bedroom, I had a moment of gratitude- for the fall not having been worse and for always having a soft place to land in the life I have created…But it wasn’t enough.

I felt down for a little while longer. Despair even. I didn’t have my usual zest. I couldn’t find my sense of humor. I cried on and off. I couldn’t think about the future (except to consider canceling the trip I had re-booked to Italy for this summer, which now just felt daunting). Every time I awoke in the middle of the night to shift positions, I felt dread. There are countless nights ahead of me. How am I going to keep this all up.

It’s scary and unsettling when I feel this way. When all the defenses are down, I wonder what will happen to me as I get worse. I worry that the coping tools I have relied upon thus far may no longer be a match for what’s coming as my weakness progresses. I worry that I will stay sad. Or grumpy and irritable. I worry that I won’t be as fun. I worry that I will lose myself.

After about two weeks, I somehow managed to find my way back, for the most part. It’s tempting to say that I don’t know exactly how, but I do, because it’s the same formula every time: feel my feelings, no matter how uncomfortable and stay where I am for as long as I need to until most of my feelings are felt.

As for my boys, I know I cannot protect them from how bad my disease may get. My lack of control over that fact feels unbearable at times. To tolerate that discomfort, I have to try to focus on what I can do.

I can make it safe for them to have and express their feelings around my disease. I can tell my son, when he admits to seeing images of my bloody forehead in his mind, that it’s natural for this to happen right after seeing something so scary. I can validate their feelings and help them feel less alone, like when he confesses that he worries about me falling when I’m out by myself. I can try to teach them that emotional agility and a willingness to adapt are really the only reliable tools we have to survive this painful, beautiful, overwhelming life.

And then I can ask them to get the trekking poles out of the trunk for me as we make our way to the gym…

“For after all, the best thing one can do when it is raining is to let it rain.“
Henry Wadsworth Longfellow

“Discomfort is the price of admission to a meaningful life.”
Susan David, PhD

And now for an announcement: The NDF Gala is back in person this year. It will be held on Sunday, April 24th at the Skirball Cultural Center. This year’s theme is “Casino Royale.” If you are available and able to attend, we would love to see you. If you are not and you have the means to make a donation, we would feel so grateful. And if neither are feasible, if you could spread the word to people in your community, it would mean a lot. Here is the link to purchase tickets or make a donation:
curegnem.org

Suffering = Pain x Resistance

I wrote the first two paragraphs of this post a few days ago when I was deep in it. Then I had to stop, because it felt like too much. Then, a few days later, I came back to it…

I am overwhelmed. There is so much going on in my head and in my body. Too much. Usually this is when I write. But I am caught between the compulsion to share everything and a deep desire to not utter a single word. I do not want to be here. I have always dreaded being here. I am here.

I am terrified.  I have become so adept at “holding both” over these past 16 years. As my body has weakened, I have strengthened my ability to make room for all the opposing feelings simultaneously-to feel blessed and cursed, at peace and terrified, lucky and unlucky. But it’s getting harder to maintain my balance in the combined dream and nightmare that is my life. I’m worried that I can’t continue to prevent this disease from contaminating all the true joy and fulfillment my life offers me. 

Lately I have started to struggle with sleep. One of the dreaded outcomes of this disease, aside from potentially/eventually not being able to feed or dress myself (I still can’t believe those words apply to my reality), is not being able to move around while sleeping and needing to be “rotated” throughout the night. Though I am not there yet, it has crept into my field of view and I am horrified.

I sleep in the same position every night- curled up on my right side, facing my husband, with a pillow between my legs for support. I’ve done everything to maximize my comfort- from our Tempur-Pedic pillows and mattress to our just right lightweight comforter. (It’s never lost on me how lucky I am to have the resources to manage my disability in the ways that I do.) 

Until now, I’ve surprisingly managed to sleep quite well. But early last week, I noticed some redness and tenderness on my right ankle. I figured I had bumped it. Or my new sneakers were agitating it. But then I started to wonder… Although I’m still physically capable of moving around in bed, I literally fall asleep and wake up in the exact same position, not having moved all night. Surely that can’t be good. What if…And then I shut it down.

I kept it to myself. I didn’t even tell my husband. How could I tell him if I couldn’t even tell myself? I eventually mustered up the courage to Google it: “pressure sore.” The mere thought of it made me cringe. It catapulted me back to rounding on inpatient internal medicine wards in medical school and residency- depressing memories of frail, elderly, bed-bound patients with bedsores or pressure ulcers. But I am young and healthy and still relatively mobile. It can’t be.

And then I mustered up a bit more courage and posted on the HIBM/GNE Myopathy Facebook group. Fellow patients generously offered their accounts of having similar sore spots, needing to use yoga straps to pull up their legs, attaching railings to the sides of their beds to help shift around, and relying on partners to move them.

And then, finally, after all the shock, denial, panic, intellectualization and data gathering, l surrendered to the deep emotional pain that comes with laying down a new tombstone in the cemetery of this disease: “Being able to sleep in peace without worry, fear, physical discomfort or assistance.” And I cried. A lot. On and off for days.

The steady investment in mindfulness, self compassion and grieving that is required for me to live an emotionally healthy life is exhausting. I honestly thought that by now I’d be done having to work so hard; that somehow I’d be spared from experiencing these dreaded next phases and accompanying feelings. I imagined proudly telling the story of how the non-profit foundation that my family started funded the research that resulted in a treatment to stop the progression of my disease before it got really bad. As in, before it got this bad.

Instead, I am forced to confront the uncomfortable truth that it only gets exponentially worse from here. 

Life is hard. There’s really no way around it. It is beautiful and strange and wondrous. And also, hard. (It doesn’t help that it feels like we are witnessing the demise of civilization.) One thing I have been reminded of over and over again with this disease is that it is resistance to pain that causes the most suffering.

So this is how I surrender- by processing, writing and sharing my feelings, by exposing my vulnerabilities, and by reminding myself that emotional intimacy has always been the greatest antidote to my pain…

La vita è pazza, no?

My membrane has been quite permeable lately. So much so that I just cried when asking Maria at the American Airlines desk for a tag to check my TravelScoot at the gate. Then I cried in the airport bathroom stall. And then one more time in front of my boys, which I rarely do. I’m not sure what’s going on with me. Actually, that’s not true. I do know what’s going on with me…I guess I’m just in awe of the fact that no matter how often I have to confront the reality of my disease, it still hurts so much. Even 15 years later.

We are at the airport for the first time since December 2019. I feel incredibly grateful and lucky to be able to take an island beach vacation with my family.  I also feel sad, scared and deflated. Sad because no matter where I go, the losses come too. Scared because I don’t know how my body will handle being out of her comfort zone for the first time in a while. And deflated because despite the number of times I’ve been stuck behind with my scooter in TSA, forced to wait (always in the way of hurried travelers) while someone repeatedly calls out for a “female assist” to pat me down and send me through- it’s no less uncomfortable.

The truth is, it’s not just all of that. Underlying and exacerbating the sadness is the fact that we aren’t boarding a plane bound for Puglia, Italy. (I’m just going to share authentically here and let go of judgement.) 

Italy holds a special place in my heart. One month after my now husband and I started dating, we whisked ourselves away to a romantic weekend in Florence. (One of the many perks of going to medical school in Israel.) That weekend was the first of a handful of trips to Italy we had the extreme good fortune of taking. We were young, carefree and in love. It was pure magic. Every time.

In the fall of 2019, I figured our kids would be old enough to take our first meaningful international trip that coming summer. Two destinations were at the top of my list: Japan (forest bathing + onsen soaking + the combination of ultra modern and traditional) and the southern coast of Italy, as I had never been to that region. We settled on Puglia, right at the heel of the boot, an area comprised of tiny seaside provinces. I found a local couple to help plan our itinerary: olive oil tasting at an (inaccessible) underground olive oil mill, kayaking (non-adaptive) through sea caves, jumping off rocks into the Adriatic Sea in Polignano a Mare, learning to make orecchiette in a grandmother’s kitchen. These were things I felt confident I could still do, but barely. Time was of the essence.I couldn’t wait to tap back into the magic: the food, the language, the beauty, the style, the exploring of new places.

Then the pandemic hit.  As did the reality that Italy wasn’t going to happen. Not that summer at least. Obviously, in the grand scheme of the tragedies unfolding around us, it was nothing. Ridiculously insignificant. Superficial. But in the context of my slowly weakening body and in my heart, it was devastating. So much so that I never really let myself process it. Until now.

What once may have been an inconvenience and disappointment, now feels like an irreversible loss. What I could do three, two, even one year ago, I can no longer. Stairs are more daunting, maintaining my balance upright is trickier and in these last few weeks, I have experienced frequent and fearsome fasciculations (last ditch involuntary muscle contractions that indicate imminent muscle death) in areas that I always thought would be spared. The control I once had over my physical body continues to slip away, no matter how tightly I try to hold on. It takes an inordinate amount of strength to let it go. 

Here’s what I will hold onto this week: the compassion of strangers- like the seat upgrade given to us by Maria before boarding and the paper towel brought to me from across the way (without me asking) by a woman in the airport bathroom. I will hold on to the loving hug given to me by my older son when he saw my watery eyes.

I will hold on most tightly to the experiential knowledge that this is my process: eventually let the sadness, anger and fear come up and out to make room for acceptance, once in acceptance, invest in adapting; after adapting, get back in touch with gratitude and joy, then stay there until the next inevitable loss, at which point the cycle will repeat itself. Adapt and evolve. It’s an exhausting process, but seems to be the most worthwhile.

During our courtship, Noah left a bouquet of flowers at my apartment doorstep with a note that read, “La vita è pazza, no?” Twenty one years later and it still holds true. Life. It is indeed crazy.

As we slowly exit the pandemic…

A couple of months into the pandemic in May 2020, I was invited to participate in a one on one backyard chat hosted by Cantor Tiffani Coyot of Temple Isaiah. In addition to being a cantor with a stunningly gorgeous voice, Tifani is also a self described “wellness enthusiast.“

Tifani recognized early on that members of the community were struggling to find ways to cope in what was back then an unprecedented reality. In an effort to offer support, she interviewed various professionals and experts specializing in physical and psychological health and well being.

As we sat in front of our computers in our respective backyards, we discussed a variety of topics. I spoke about the overlap between the pandemic and my disease in terms of learning how to relinquish control and tolerate uncertainty, about the importance of being vulnerable enough to feel our feelings- especially in the face of grief and loss and about my favorite topic, the deeply therapeutic benefits of true emotional intimacy.

My hope as we slowly exit this pandemic is that we carry forward with us the lessons we learned, beyond those related to good hand washing. Getting comfortable with discomfort is an incredibly valuable skill to hone, pandemic or not.

I also hope that we as a society can remember how capable we are at adapting to meet the needs of everyone. People with disabilities are the world’s largest in minority, yet it took a global pandemic to make essential activities like shopping and doctors’ appointments more accessible with curbside pick ups and telemedicine appointments. (More on that in a future post.)

If this year has taught us anything, it’s that we are all more capable of changing and growing than we realize.

Below is the video of our chat…

Tunnels

We made it to 2021.

No matter who you are or how you move through life, these are trying times. Even if denial is your go-to coping strategy, it’s become increasingly difficult to avoid the discomfort. Loss is everywhere.  When we hear that someone we know who has it or was hospitalized or has died from COVID-19, we are reminded. When we notice we have a dry cough, feel nauseated or feverish. We feel it.  That pang of panic. The one that immediately transmits from the gut to the brain the dreaded, acutely unanswerable question: Oh no. Is it happening? Do I have it? 

For most people, this is a new, very Covid-specific phenomenon.  But it’s the emotional landscape I’ve been navigating ever since my HIBM/ GNE myopathy diagnosis. Fear and helplessness. Overwhelming mental fatigue. Ongoing attempts at reassuring myself it’s going to be okay, despite the consistent threat and actuality of living in a body whose muscles are increasingly less okay; never knowing when, how quickly or how severe the damage will be or worse, the toll it will take on my psyche. Never being able to feel truly and wholly carefree.

This pandemic is currently in a brutally dark phase. We don’t know the extent of the devastation ahead nor when it will come to an end. But as the vaccine rolls out, the light is ever so slowly becoming brighter. Glimpses of what life might look like when it’s all over are slowly coming into view.

For those of us living with chronic, progressively debilitating diseases with no treatments or cures, our tunnels remain long and dark. The losses will continue as they always have. The same anticipatory anxiety and feelings of vulnerability will linger long after this pandemic is over. Possibly for the rest of our lives.

When I was first diagnosed, I was told the end was in sight. That was 15 years ago.

Luckily, I don’t live in anguish all the time.  I’ve worked hard to learn how to create my own light.  But the first few months of quarantine really tested my resilience. I learned the excruciating way that abruptly discontinuing physical therapy, massage and exercise was not an option for my body, pandemic or not. I couldn’t move without pain, I couldn’t stand up straight and I relied on a wheeled office chair and a walker to get around. 

Then, a couple months later, I emerged pain-free and into one of the most magical nights of my life, celebrating my son’s “car mitzvah.” (see post here). The residual feelings of pure joy and gratitude from that experience sustained me for a long while. After that, between remote school starting, work being busy and consuming the news non-stop in my down time, my mind was sufficiently distracted. I rarely had time alone. And without realizing it, because I wasn’t heading into the (often inaccessible) world on a daily basis, I wasn’t experiencing the usual angst and frustration that accompanies such simple acts as stepping up onto a curb, pulling my car door closed or walking my kid across a soccer field. I was doing well.

That changed over Thanksgiving. After taking all the possible precautions, my boys went to spend some time at their grandparents’. More than ever, I was looking forward to the down time with my husband and the freedom and relaxation of being temporarily kid-free. Instead, within hours of being home alone, I was greeted by an unexpected and unwelcome quiet in my mind. I felt unsettled. Slowly, I started to hear the noise that had been drowned out for so long by the more immediate stressors of living, working and raising kids during a global pandemic.

All of the intimate, quiet losses I’d suffered during the last 6 months of the pandemic started yelling at me, demanding to be felt and grieved. Like the time I was pouring a large bottle of cold brew coffee into my cup and it spilled everywhere because my wrist gave out. Or when I went to grasp onto and drink from my full 1 L Nalgene bottle and I didn’t have the strength to lift it all the way to my mouth without assistance from my other hand. Or when the TV remote dropped on the floor while I was lying on the couch and after leaning down to pick it up, I could barely lift my head back up onto the cushion. Or when I went to put on a button down shirt for the first time in 9 months and I literally could not button it. Not a single button. No matter how I contorted my weakened fingers. No matter how many minutes I spent trying.

Foolishly, I thought I had deftly filed those losses away as they occurred. But I know better. Those moments are so terrifying that even when I try to slip right past them and keep them to myself, they leave a mark on my amygdala. 

So I sat in my quiet house and I felt angry and sad. All I could do was cry. 

I cried a lot that week.The timing was suboptimal, but this disease doesn’t let up. I can’t afford to be irresponsible when it comes to my mental health. I would be such a sad person if I didn’t cry. Staying in denial for too long would only increase my risk for injury and potentially more disability. I must be alert when loss comes. I must stop, stare at it, hold it, grieve it and ultimately find the strength to let it go. I must be mentally prepared for the reality that I may be saying good-bye forever. In these moments, I must not try to talk myself out of the fact that what is happening is real. I can only talk myself into accepting what is true, if I am to continue to emotionally survive life with this disease.

A few weeks ago I had two medical appointments I had to cancel because of the surge. One was to finally start dealing with the worsening arthritic- like pain and swelling in the joints of my much weaker left hand. The other was to get fitted for a walker. Not because I need a walker full-time just yet, but because this is my process. If I get it before I need it, I can ease in, reminding myself it’s still a choice, not a need. Then, once I inevitably must rely on it, I will hopefully have become somewhat desensitized to the emotional discomfort it brings. Not the discomfort of the walker itself as much as its unwelcome reminder that no matter how much I exercise, how healthy I eat, how hard I work to find joy, I remain at the mercy of this disease. 

It didn’t feel good to make those appointments. Doing the hard work of showing up and confronting uncomfortable truths in real time rarely does. But avoiding the discomfort inevitably feels even worse and almost always comes at a higher price. 

This pandemic is uncomfortable in every and all ways. You can choose to try to bypass, distract from and hold off on feeling all the feelings from now until it’s over. But I don’t have that luxury living with this disease. I can’t just choose to temporarily emotionally survive until it’s over. I must continue to find ways to live in it, fully and wholeheartedly. I must continue to trust that growth will follow discomfort and that adaptation will follow loss. For me, it’s the only way through. 

My Son’s “Car Mitzvah:” A Spiritual Protest in the…

Let’s face it. It’s becoming increasingly harder to find joy these days. Loss lurks around every corner- the loss of actual lives, the loss of what we thought life would look like, and the loss of simple, carefree physical togetherness, unencumbered by a hypervigilance around health and safety.

Our family has been extremely lucky thus far in this pandemic. My husband and I have secure jobs as physicians, we manage childcare, and we and our loved ones have remained healthy. Our greatest loss has been that we had to cancel our son Asher’s bar mitzvah on May 9th- an afternoon service followed by dinner and dancing that had been in the works for over a year.

When we realized we wouldn’t be able to celebrate Asher in the way we had originally planned, we felt conflicted. Facing the unprecedented challenges of our current reality, our options were to move ahead with a virtual ceremony or to postpone for a prolonged period of time. Neither satisfied what felt most meaningful to us about Asher’s bar mitzvah: to have his community of friends and family (including all of his grandparents) collectively share in the experience of marking this milestone- both in spirit and in physicality. And so, just like our Jewish ancestors have done countless times before us during periods of change and hardship, we adapted. 

Behold, Asher’s “car mitzvah,” a  drive-in movie theater-style bar mitzvah. Last Saturday night, we transformed a second story rooftop parking lot graciously offered by a generous family member into an outdoor sanctuary.  We had 100 guests in 35 cars, a masked Rabbi, a masked Cantor, 2 masked musicians, a large stage to allow for proper physical distancing and two LED screens onto which the service was projected. People tuned in to an FM radio station to listen. We arranged for guests to have prepared food and drinks to enjoy in their cars. Families took car selfies in a virtual photo booth which were then uploaded onto the big screens so everyone could enjoy seeing who was there. And as a family, we drove around the lot in a yellow golf cart, waving to and greeting guests along the way.

We never could have imagined that this was how we would find ourselves celebrating Asher’s bar mitzvah. Just as we never could have imagined that this was where we would be, in this current reality, at this moment in time. And yet, here we are. 

Having to adjust and adapt to life not going the way I thought it would go is a process with which I have more experience than I would like. Fourteen years ago I discovered I had an ultra rare, adult onset, progressively debilitating muscle-wasting disease. This means that over time, my body is slowly losing its physical strength. As such, I am repeatedly faced with the same challenge- how to allow in the extreme emotional discomfort that accompanies each devastating loss without letting it consume me.  And even beyond that, how to counteract it with joy. 

On the invitation, we promised a “physically distanced, emotionally intimate” evening and that it was. There was a palpable magic in the air. The combination of hearing our son with his exquisite voice chant torah into the night sky along with seeing all of his grandparents seated at physically distanced tables in the front row- their eyes welling with tears of pride and joy- was perfectly imperfect. It was an important reminder that as Elie Wiesel once said, “Even in darkness, it is possible to create light.”

This overwhelming sense of joy did not come easily nor did it require a denial of the fact that we are living in the dark reality of a terrifying global crisis. That was evident all around- people wearing masks, remaining in their cars, offering virtual hugs to each other. In fact, it came in spite of it.  Finding an alternative way to honor our sacred rituals during these trying times and safely bring people together to witness our son take his first step into Jewish young adulthood- that was our own spiritual protest against letting the darkness win. Being truly present and engaged with joy, no matter how painful the circumstances, is transformative. For the first time in as long as I could remember, I even forgot about my disease. 

Of course, we originally had our reservations about having a celebration during this time. It felt somewhat incongruous to plan to join together for a simcha or celebration, yet it felt equally life-affirming. To be able to seize the moment and make room for joy and gratitude right alongside pain and loss is a fundamental Jewish practice. When I was writing about this in my welcome letter to our guests, I emailed our rabbi, Dara Frimmer of Temple Isaiah. I asked her if this paradox was indeed a Jewish thing or if I just imagined it to be because it felt like such a Jewish value. She reminded me how integral it is to our faith- “we celebrate with joy while sitting in a fragile sukkah, we mix charoset with bitter herbs, we kindle Hanukkah lights in the darkest part of winter. ” It is almost never an either/or. It is almost always both.

That was the true magic of Asher’s car mitzvah. It was both. It was imperfect and we did it anyway. It took a lot of hard work, patience and an inordinate amount of planning. It cost us many sleepless nights wondering if we would be able to pull it off or worse, if we even should. But in the end, we persevered. While cars honked and flashed their lights as we ended the service with “Siman Tov u Mazel Tov,” it felt nothing short of miraculous. This is the spirit of resilience during these unprecedented times that we wanted to offer Asher as he became a bar mitzvah. We hope that it will always serve as a reminder to him that it is not what happens in life that matters as much as how we cope with and adapt to it.

PS. If you’re also determined to find creative ways to celebrate safely these days, go to www.mitzvahsisters.com