Keep Marissa Moving

Dear Friends,

 

There is something I haven’t told you. I was hoping I would find a solution before I had to share. It turns out I need my friends to get me through this. I have been having increasing difficulty walking since Mars was born, particularly in the last three years. There have been other symptoms too. Doctors sent me from one specialist to the next, to endless physical therapy, but mostly told me it was in my head and I was fine! I was not fine, though I tried to be, but the problem was in my head. A neurologist finally ordered the right tests last year and told me I have significant damage to my brain and spine. I have Multiple Sclerosis. I’ve had it a long time.

 

I didn’t know what MS was at first and my neurologist told me it’s a disease where one’s immune system attacks the myelin sheath around nerves creating lesions in one’s brain and spine and eventually disrupting communication from the brain. It’s progressive and incurable. Depending on where lesions are, MS can disrupt mobility, dexterity, vision, and cognitive functioning. These are all things I’ve taken for granted and I am scared to lose more than I have already.

 

Movement is my joy. I’ve danced most of my life. I ran track and rowed crew in school. I love studying wildlife in remote places on the many Earthwatch trips I’ve facilitated. My dream dream is to trek through Borneo and see orangutans in the wild and I was inching closer and closer though it may now never come to pass.

 

It has been very hard not knowing what my future looks like. For weeks after the diagnosis, I cried. My dear friend told me to breathe in the pain of everyone with MS and breathe out the ability to heal them. I did that with each breath, in and out.

 

There are people who live with MS without much obvious impact but there are also many people with MS who become physically and cognitively disabled. Given my late diagnosis, I have to act fast to salvage all I can.

 

There are intense drugs on the market which I am now on, but these only slow progression. I've done research and am incorporating ways to heal. I have so much left I want to do with my mind, my body, my life.

 

The greatest hope lies with stem cell transplants. In the U.S. the only way to get this treatment is in a clinical trial. I don’t qualify because I haven’t had an official diagnosis long enough! Luckily, there is good care out there at a clinic in Mexico started by a Mayo Clinic trained leader in stem cell therapy. At Clinica Ruiz, they have a 78% success rate with Hematopoietic Stem Cell Transplants (HSCT), but even while it costs less than the true cost of my current medications in the U.S. it’s more than I have. Yet this is the best chance I have.

 

HSCT would involve a month-long stay, intense chemotherapy, harvesting and reintroduction of stem cells, and a state of neutropenia where my immune system would be wiped out and rebuilt. I would need someone to come to help. When I return, it would mean months of avoiding crowds (which I have plenty of practice with) and ongoing recovery. It would all be worth it if it increases my odds of staying mobile and buys me time.

 

There is urgency because HSCT works best the closer you are to the onset of MS. While this treatment has successfully halted progression, it is less likely to rewind disability. I have a heavy burden of damage, my MS symptoms are getting worse and I cannot afford to accumulate any more.

 

This Mexico adventure would be like no other I have been on. I would be surrounded by a different culture with an urge to connect and explore, but confined to my quarters able to search only within. I am envisioning it as a writer’s retreat. I would be going to work on my new play about MS and the mind/body connection! I will birth art from this challenge in life.

 

This diagnosis has rocked my world. It has called into question everything I know about myself, everything I thought about how my future might look. Everything has changed. I am grateful that I’ve had as many experiences as I have in my 45 years and gotten time to care for and be active with my son. But I am in mid-life and have to live in this body for a long time to come. I had dreams that I would one day gallop on a horse, hike through forests with friends and go for long bike rides with my son. I want those still so much and to write letters by hand and read books and dance until I’m very old.

 

It is so painful that there is treatment that could help, but that might not be accessible. If you have the ability to give toward my treatment and care, I would be grateful from the bottom of my soul. I will live the best life I can whether I am able to get this transplant or not. I will live with gratitude and diligence and striving to be and do better. And I will live a life of love and connection and, in that way, I know I already have all I need. I have the miracle. It’s just a matter of letting it unfold.

 

A friend wrote me and said when a calamity is shared among loved ones it gets cut into smaller and smaller pieces with each person who offers support taking bits of the pain away. Every person who has touched my life I am thankful for. Breathe in the suffering, breathe out the healing, breathe in the healing, breathe out the suffering. We are all connected and nothing matters more.

 

I never imagined I would have to ask for help in this way, but here I am needing help. I don’t want this to be real, but it is. I know I will be ok no matter what, but there is a best life out there for me and that’s the one I am aiming for.