Sophie Strand Asks for Help on Her Healing Journey

Sophie, my daughter, has been sick for 15 years. In March her memoir about her journey with chronic illness, The Body is a Doorway, will finally be in bookstores—but it is a story without a tidy ending. Unlike many chronicles of disease, it does not conclude with a treatment or a pill that makes her healthy again. Instead, Sophie asks hard, uncomfortable questions about how we live with disability and dysfunction and how we weave our own human story into the long story of the earth. Many people have found in Sophie’s talks and writing over the years a witnessing of their physical situations that in itself is a kind of healing—because they no longer feel alone.

As Sophie’s mother I will say that I am daily astounded by her creativity, her literary output, and her resilience. She confronts rejection and she gives her writing away online. She receives a frightening diagnosis and she writes another book. She is always telling another story or writing another world into being. Unfortunately, that is often at the expense of her actual body, which is demanding at this moment that she focus all of her attention and resources on stabilizing what is currently happening. She is very sick right now.

Sophie’s book and substack chronicle her illness—the misdiagnosis that leads to mistreatment that leads to so many complications, her eventual diagnosis with Ehlers-Danlos syndrome, a complex collagen disorder, with at least 15 different variations and expressions, and a host of problems—with gi function, eyes, lungs, hearts, kidneys, joints, etc. There is no treatment and there is no cure. There is managing all of this and all of the various specialists it requires. In addition, Sophie developed a mast-cell activation disorder from an onslaught of antibiotics wrongly prescribed for Lyme disease (which she probably never had) that further ravaged her digestive system and made eating a minefield. This past year we have also found out that Sophie has the highest blood mercury levels ever recorded in New York state, which may be a complication of the EDS and another genetic disorder (recently found out) that affects how she metabolizes certain vitamins. She is very slowly beginning to treat the neurological problems these intersecting issues have caused, but it’s a long uncertain road. Her severe autoimmune issues have also now resulted in frightening masses in her lungs that will need to be biopsied this spring. We still do not have clear answers as to what the nature of these masses are and what treatment they may necessitate.

Help.

After 15 years of somehow finding the resources to get her to specialists and healers of all kinds, after catapulting herself to financial independence through her extraordinary work, we her parents and Sophie herself are practically and emotionally exhausted—at the very moment we have found a treatment, not covered by insurance, that might actually make a difference, that while it is not a cure might provide a stronger foundation of daily well-being.

For the first time, we are asking for financial help for Sophie’s treatment—to pay for Sophie to receive twice weekly infusions to reboot her immune system, to help her with detoxification, and to address her complex genetic vitamin deficiencies. The infusion treatments help Sophie experience an unexpected base of relief—but they are expensive and not covered by insurance. A year of such treatments might make a big difference to her day-to-day functioning. That’s our hope.

Sophie, of course, imagined she’d write another book to pay for them—but as her mama I am saying, “Sophie needs to rest, rest, rest, and rest.” Sophie will imagine those books this year and when she is stronger and her eyes are better, and she has more energy she will write them for us and we will, in turn, be healed by her vision and her wisdom. But right now let’s see if we can help her find firmer, healthier ground upon which to sit, stand, dance, and write.

A year of infusions, every four days at $425 a shot, will cost us $38,250 and perhaps more as we are able to expand what treatments she can receive. In addition, we want to get Sophie an elliptical so she can sweat (detox) without driving (she is experiencing serious visual problems and driving is very hard right now) or going, with her compromised immune system, to the petri dish of the local gym. We are also budgeting an extra $12,000 for her insurance deductibles for the coming year. We already know she has a biopsy on the schedule and we just don’t want financial anxiety on top of all the other worries.

Because of her complex eye and neurological issues Sophie is really limiting time on social media and all screens in general so I ask that you not bombard her with messages.

This gofundme is the place for messages of support and I will pass them on to her. In addition, please know that Sophie has an incurable genetic condition; these treatments will not fix her EDS. What we hope they will do is lessen a lot of the other issues and problems that have arisen because of her collagen dysfunction. Sophie is beautiful, she always looks great, she has fabulous manners, but please don’t ask if she is “all better.” It kinda makes her, and anyone dealing with long term illness, crazy. Also bombarding people with questions about their illness can make them feel crazy. The best question, the question that promotes intimacy, is “how are you doing right now?”

Finally, we’ve been on this road for 15 years….and it’s even way more complicated than this short piece of writing has explained. We’re not asking for advice, the healer du jour, your favorite herbal remedy, your cousin’s bff’s miraculous cure, none of it. Please support her financially getting these infusions. That’s the help we need this year. And of course, always, prayers, prayers and more prayers.

I’ll update here from time to time when I have new answers or new information. Thank you all so much in advance. Many of you have reached out this past year asking how you can help. Well, this is it. Thank you, thank you.

AND go read Sophie’s books (The Flowering Wand, The Madonna Secret, and The Body is a Doorway.) She wrote all of these books before she was 30, dealing with debilitating illness. Imagine what she might do if she felt a tiny bit better. AND she has a gazillion interviews, podcasts, and teachings online for those who miss her presence…and she really wants to be strong enough to do a few events when The Body is a Doorway comes out in March.

Thank you so much to friends near and far. Thank you for recognizing what an extraordinary soul Sophie is in the world.