Help Daphne fight GBS with your love and support!

The act of holding hands is something you take for granted until that effortless gesture is something that becomes impossible. It is terrifying to miss something this simple. Finding a love you can marry not once but twice is rare. Daphne and I have had that privilege. It is one that I am forever grateful for.

On August 8, Daphne began to feel pins and needles in her hands, just after a bout of food poisoning a few weeks before. As Daphne is a prior Guillain-Barre Syndrome survivor, we were all too familiar with what that could mean. On August 11, she was admitted to Emory Midtown Hospital for observation and, ultimately IVIG treatment. IVIG treatment is around $10K per IV, and Daphne received 5 of them. They helped slow the disease's progress, which they fortunately did, and Daphne was able to avoid being placed on a ventilator. However, GBS does not have direct treatment or a "cure" because your body must regrow the myelin on your nerves to reverse the paralysis affecting your body. Daphne's paralysis worsened, affecting her hands, breathing, blood pressure, and her face/chewing/talking. She lost all strength in her legs, and we were accidentally left in the CDU (Critical Decision Unit) for four days when the visit was supposed to be 24 hours in that unit. This led to 3 falls where I was able to lower Daphne gently to the ground so she wasn't further injured. However, the care we received at Emory could hardly be considered care. Fortunately, the neurology staff was excellent and advocated on our behalf for Daphne to move to rehab following the IVIG treatment, but ultimately the 11 days spent there were excruciating to witness.

By the time we left Emory Daphne couldn't make the facial expression below anymore:

For those who don't know, we pour everything we have into our business. Our child is MudFire and all of those making work inside of that container. Daphne and I love MudFire. We love the inner workings of loading and firing kilns and seeing the work produced by all of our resident artists. Daphne enjoys even the most gruesome of accounting days and loves our private studio space in the front where she can read tarot, host a meditation, get some personal ceramic work finished and enjoy our plants.

Special thanks go to our entire team helping to run MudFire while we are in the hospital and even more love to the crew helping to take care of our babies Cherry and Rockit, who are in their senior years and need so so so much love. This is a horrible time to be away from them. MereBear, as Daphne calls them – has been heading up the care team, including Niki, Christina, Caroline, and Molly, to help care for the dogs without us.

Daphne is getting stronger by the day but is currently using a powered wheelchair – we’ll have a medical conference this week which will help to determine whether we will be allowed to go home. One aspect of pouring everything into our business, MudFire, is that we don’t own our home – we rent. Modifying a rental property is difficult, and our landlord isn’t the most cooperative. It might mean adding equipment, a wheelchair, a ramp, modifications to the bathroom, doorways, doorframes, and living areas, all things that wouldn’t be financially covered by insurance.

Most GBS survivors have some lasting nerve damage causing a lack of feeling or control. Daphne may regrow all of her myelin or be affected by this for a while, even years to come. Nerves regrow very slowly – only a millimeter or so a night, so it is hard to say how long her recovery will take. Most GBS patients are walking fully again in 6-12 months.

We have a shitty Bronze level ACA plan with a very high deductible that doesn’t have good coverage, and unfortunately, GBS requires a lot of special treatment that is considered “out of network”. Bills are already rolling in prior to any home fixes, possible home care, future PT and OT, medications, etc. We don’t know how much equipment we will need, whether our car will need to be rehabbed, and what the next 6-12 months hold for us. Because Guillain-Barre is rare and only affects 2000 – 5000 people annually, there is not much information or research that is helpful at the granular level that I want. Because what I want is to be able to help her.

Daphne struggles most with rest, naturally finding it difficult at night to be unable to move to reposition without help. This has been a humbling experience for someone so strong and independent to need help with every possible daily need.

Daphne is a fighter, and I am a fixer. I have been knocked down because this isn’t something I can fix. This has been incredibly hard emotionally and physically for both of us. It is so hard to see someone you love so much, unable to move or grab your hand. It was remarkable to hear Daphne sneeze and cough for the first time after her diaphragm started to regain feeling and control. Those who know Daphne know that she has the most considerable lung capacity, and it was eerie to see her struggle to breathe.

We currently live at the Shepherd Center, where Daphne is undergoing PT, OT, Speech Therapy, and more. We are grateful to be there, but this experience is harrowing. We'll be here until October 12 - meaning this horrific experience will mean having spent over 60 days in the hospital. Daphne loves the holidays and wants desperately to be mobile and upright by her favorite winter times.

Thank you in advance for your kindness and compassion. Daphne and I have given much of ourselves to the ceramic community over the past several decades, and now is our time to ask for help. We need you like you have needed us in the past and will need us again in the future.