Personal Health Update - Wheelchair to Home to Healing

Papa, what if this is a stroke?

It was 2 am. I was scared and did what I often do. I called my dad, a physician in a different time zone. My speech was slurred. I was feeling weird on the left side of my body. A shower often solves many of life’s problems so I thought it might help me this time too. Except that this time it didn’t.? Wearing my clothes felt tough, brushing my teeth didn’t feel the same. Finally, I woke up my husband and it was clear something was off.?

We rushed to the ER. My heart rate was way beyond normal, I was terrified, and the thought that this may be something life-threatening wasn’t helping calm me down either. They did a battery of tests and ruled out cancer, stroke, or a brain bleed.?

That felt like a relief. I could breathe again but then there was the next challenge. The team didn’t know what it was. When one of the neurologists came to examine me on day 3, I felt so seen and safe in her presence that tears rolled down my eyes and I begged – “Doctor can you please figure out what’s going on? I have young kids at home. I can’t imagine dying or staying in bed this way forever. I want to recover.“ She held my hand and said with compassion – “I think I know what you have. Give me a few more days until we can do some more testing to figure out.” The hope that she had for my life gave me hope for my life. Her kindness, empathy, and belief that there is light at the end of the tunnel without overpromising anything helped me find hope and courage.?

It took a few days, an ambulance transfer to a different hospital, and many more tests to confirm my diagnosis – Guillain Barre Syndrome. At that point, I had lost my ability to eat, drink and swallow. My speech was no better than a toddler learning to talk and my upper body had lost most of its strength, thankfully my lungs were completely unscathed. I was in excruciating pain.

The doctors assured me I’ll get better, hopefully back to normal but they couldn’t tell me how long it would take or the sequence of my recovery. Since then, it’s been an intimate relationship with patience, surrender, hope and love. It’s meant learning to live with pain, and discomfort and not knowing when I’ll feel at ease in my body.?

I am often asked what has helped me heal and it’s a simple answer – it’s the people. The incredible staff and caregivers in the hospital, the friends and family who spent hours by my side, and those from afar bringing their compassion in their beautiful ways. I felt loved in ways that words can’t describe yet my body could feel and heal.?

I had my husband, siblings, and parents around me literally 24/7 for all those weeks in the hospital and then a village of caregivers taking care of them so they could nurse me to healing. My hospital room felt like a safe cocoon of love, compassion, and belonging.?

In a world that celebrates our independence, I learned to welcome our collective interdependence – to let people into my world and care for me, for my sisters to give me a bath when I couldn’t lift my hands to grab the soap, pull up my pants in the bathroom when I couldn’t do it myself. I’d often have tears – of feeling so vulnerable to literally be naked in front of people, to have moments of fear, “What if my improvement plateaus?”, to wonder how long it would take before I could swallow a grain of rice and of course gratitude to have amazing humans who were willing to pause their own life to care for me.?

A dear friend once texted me asking to come and visit one weekday so my mom could take a break. I remarked it was a workday and I knew she had just gone back to work after maternity leave and would need to drive an hour to get to me. She said – “I am taking the day off. It’s not a big deal.” I was moved by her generosity but it felt like taking too much from her. She had visited me a few days back and as much as I was longing to see her again, it felt uncomfortable to have her put all of her needs aside in an intense season of life and also at a time when layoffs were happening everywhere. I was sharing with my mom and she said – “Don’t deprive her of the joy of showing up for you. I have seen how much she values this friendship. Let her come and love you.” I softened, took a deep breath, and realized It was a moment to simply receive, even with the discomfort I was feeling. She came. It was a nourishing afternoon, my mom got a break, she went for a walk, and took a nap in a real bed after several days of sleeping in a hospital chair. It was a good day.?

Falling sick and being cared for reinforced my faith in humanity, in our collective fabric of family, friends, neighbors, and community. It has reminded me that what truly makes our lives rich is contribution, service, and compassion. At a time when so much feels broken, I was also reminded of the generosity that still exists in our world. In a world where we are told financial wealth trumps everything, it is a reminder of the power of social and relational wealth and that it takes time and effort to cultivate and maintain.?

As I sit here reflecting on some of those early days, I am humbled by how far my body has come. I can now walk for a mile (albeit slowly) when a few months back I needed a wheelchair to go from one floor in the hospital to another. While I knew I was not going to be in it forever, I wondered what it’s like to not be able to walk ever. Those are moments of common humanity and connection and my heart skips a beat every time I see someone in a wheelchair and I wonder what they have. Will they be able to walk again??

I ate a huge falafel burger a few days back. What I wanted most in those first few weeks was to be able to drink a glass of water using my lips and today I can and that feels magical every single time. I am still very slow in all that I do but much faster than on day one. That’s been a powerful reminder to compare myself to where I was a week or month back, not where I was before Dec 1st when I first got admitted to the hospital.?

I had moments when I didn’t know if I would die or be disabled for life. I am still navigating uncertainty in a way that sometimes feels too heavy to carry. A few days back, I called my sister with tears and said – “When will I not be sick again? I am too tired of this pain.” And in a few minutes, we were laughing again.?

I have found so many glimmers of hope, joy, and meaning alongside this grief. What’s helped me the most is to make room for the big feelings, to learn to befriend them, and to accept all that is happening. It is by walking through tunnels of grief, pain, fear, sadness, frustration, and anxiety with compassion and curiosity, that I am able to also find moments of joy, connection, and abundance. In some moments it is harder and those require even more love from myself and the courage to invite others in when the weight feels too heavy to carry alone. When my face had literally no expressions and I didn’t enjoy looking at myself in the mirror, I had to feel the sadness and fear without letting it consume me, to then be able to access hope and still love that face of mine.?

I don’t know when my body will not be in pain every waking minute, will it be months or years? I don’t know when I will be able to co-sleep with my kids again all of us shaped in a pretzel (that’s what the kids call it!). I am not sure how long it will take before I can walk for miles in my neighborhood and climb mountains again with ease. I don’t know when I will cook for pleasure. I don’t know when I will be able to write for long stretches at a time.?

But here is what I know – There are glimmers of joy through all the not knowing. There are ways to connect with myself and the world even through pain and discomfort. I can still watch the sunset from my bedroom window or step out the door to marvel at the orange and pink sky. I can let fear walk in and the tears trickle down my cheeks and then love myself through it all. I can trust my body to heal at its own pace and rhythm. I can show up with kindness. I can welcome growth that’s often invisible. I can savor the goodness in the world around us. I can feel the snuggles and hugs of little humans around me. I can enjoy a home-cooked meal that was lovingly put on my plate.?

Most days, this is enough. It’s not easy, not always graceful but still enough, for now for this season. And yet, I dance between the being here and a longing for a bit more ease. I know seasons change and spring always arrives. Until then I will savor the beauty of the winter even when it’s cold, dark, and scary outside.?

I'll be on pause with my words here until I recover a bit more. Thank you for reading and for being a part of our shared community here.