Rachel Farahbakhsh

[Español al siguiente] Friends, I would like to share about two very special people: Lucky and Jose. I met Lucky and Jose in 2009 when I arrived in Antigua, Guatemala and I lived with them for two years. Their home hosted many volunteers, tourists, students, and wanderers from all over the world. At the big table in their kitchen we ate food, learned about Guatemala, and each other; we shared stories, laughter, sometimes tears, and lots of hugs. Lucky and Jose created an atmosphere of acceptance and love for many, many people. Lucky and Jose are special people—they have overcome many challenges together, including one of their biggest recently. Eight years ago Jose was diagnosed with Parkinson’s disease, and a short while later, he was also diagnosed with amytrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. While many people live with Parkinson’s for decades, ALS has a much shorter life expectancy, only 2-5 years. These diseases have changed Lucky and Jose’s daily lives. The impact has been physical and emotional, and also financial. Jose needs ongoing medications and doctor’s appointments. He has also benefits from therapies and supplements. This increase in expenses coincides with a decrease in their main source of income (hosting students) due to the pandemic which caused many changes in Antigua, including the closure of many Spanish schools. This financial stress creates additional pressure as they navigate the diseases. Nonetheless, Jose maintains an incredible resilience and peace of mind. He has accepted his diagnosis, but does not give up. His mental health continues to be strong, and he keeps his mind sharp by practicing English, learning how to code, reading the writings of Marcus Aurelius, and maintaining a mischievous spirit. His sense of humor is as vibrant as every and both he and Lucky laugh every day. I spent 2 weeks with Lucky and Jose in April. Jose’s mobility is reduced. He can talk, but his speech has also been affected by ALS and there are days that speech hurts so much that he prefers to stay quiet (can you imagine?!) Thankfully Jose is able to communicate using hand movements and facial expressions (his eyes still say alot!) Jose has had various health crises, including one during my visit. It was very difficult and scary and was a big reality check for me on how quickly the disease is progressing. In conversation with Lucky, we realized that the family should prepare for Jose’s death, as ALS is a terminal disease. This is where the huge network of friends and chosen family that Lucky and Jose have nurtured come into play. I’m asking for help in raising funds, so that when Jose dies Lucky can focus on him, her grief, and their family, instead of being worried about expenses and logistics. We are trying to raise $3,500 USD for funerary services through a funeral home that Lucky has a relationship with. Any money raised above the cost of the services will go towards Jose’s medications and therapies to support his quality of life. Jose has made peace with his fate, and he is creating a path for other ALS patients in Guatemala. Thanks to his case and advocacy within the public health system (IGSS), Riluzole (the primary medication used to treat ALS) is now available in Guatemala. They have also made connections with other recently diagnosed ALS patients and are sharing their stories on social media platforms. Thank you for your support and love, Rachel Jose's Social Media: https://www.instagram.com/chepito_53 https://www.youtube.com/@josemercales1839 Hola amig@s, Les quiero contar de dos personas muy especiales: Lucky y Jose. Yo conocí a Lucky y Jose en enero 2009 cuando llegue a Antigua, Guatemala y viví con ellos por 2 años. Su casa ha sido un hogar para muchos voluntarios, turistas, estudiantes, y mochileros de todo el mundo. Alrededor de la mesa de su cocina comimos, aprendimos de Guatemala, intercambiamos; compartimos historias, risas, algunas lagrimas, y muchos abrazos. Lucky y Jose hicieron un ambiente de aceptación y amor para muchas, muchas personas. Lucky y Jose son personas muy especiales--han podido superar muchos desafíos juntos, incluso uno de los mas difíciles recientemente. Hace 8 años a Jose le llegó una diagnosis de la enfermedad de Parkinson’s y un tiempo después también le diagnosticaron con esclerosis lateral amiotrófica (ELA.) Estas enfermedades han cambiado bastante a la vida diaria de Lucky y Jose. El impacto es físico e emocional, pero también económico porque Jose necesita muchos medicamentos, visitas medicas, y le beneficia terapias, y suplementos. Estos gastos combinados con el impacto de la pandemia en su ingreso principal (tener estudiantes en la casa) ha creado una fuente de estrés y presión para los dos. Sin embargo, Jose tiene una resiliencia y fuerza de salud mental impresionante. Ha aceptado las diagnosis y tiene mucha paz. Siempre resiliente, Jose no se deja vencer y se ocupa su mente con practicar ingles, aprender coding, leer las escrituras de Marco Aurelio y hacer travesuras. Su sentido de humor esta mas presente que nunca y no se deja de reir. En abril pasé dos semanas con Lucky y Jose. La movilidad de Jose esta bastante afectado. Jose aun puedo hablar, pero también esta afectado por ELA y hay días que cuesta tanto que es mejor quedarse callado (difícil!) Menos mal que Jose mantiene la habilidad de expresarse bastante con sus manos y expresiones faciales. (Especialmente con sus ojos picaros.) Jose ha tenido varios crisis de salud, incluso cuando yo estaba de visita. Fue bastante fuerte y espantoso para todos, y me sirvió como un ‘reality check’ de lo rápido que progresa esta enfermedad. Hablando con Lucky, nos dimos cuenta que es seria bueno para la familia estar preparado para lo inevitable. Aquí viene la petición de ayuda al gran network de amigos y familia adoptada de Jose y Lucky. Pido su colaboración en recaudar los fondos para que cuando toque el momento Lucky pueda enfocarse en Jose, en su duelo, y en su familia en vez de estar preocupada por pagar los servicios funerarios. Busco recaudar $3,500 USD para los servicios funerarios. Si logramos recaudar mas del costo de los servicios, se utilizarán para los medicamentos y terapias de Jose. Jose no solo ha llegado a tener paz para si mismo, sino también está abriendo caminos para otros que tengan ELA y Parkinson’s en Guatemala. Gracias a su caso y testificación dentro del IGSS, el medicamento Riluzole (tratamiento principal de ELA) está disponible ahora en Guatemala. Lucky y Jose han hecho conectes con otros pacientes recientemente diagnosticado con ELA y están publicando su historia en redes sociales. Gracias por su acompañamiento y amor, Raquel Social Media de Jose: https://www.instagram.com/chepito_53 https://www.youtube.com/@josemercales1839