The gap I have been worrying about lately is one of resources. There are so many MCS patients who are in a desperate state of homelessness and isolation that I would like to help and do not know how. My instinct is that some of my fellow sufferers will heal to some degree and while they may be at a low point now, they are on the right path with the right resources and will improve. I know this because I was once as sick and desperate and have healed a great deal. But some portion of those very sick MCS patients, who I am aware of through online support groups, are most likely not on a healing path and do not have the resources to get there. Recovery from chemical injury requires huge financial resources thanks to the combined needs of qualified medical intervention and patient lifestyle changes. It takes a while to find the right doctor and safe healing space and then even longer for your body to do the work of healing. Even if, by some stroke of luck, a chemically injured patient has the financial resources and the time, few of us have the emotional support that is absolutely neccasry to survive the healing work. No wonder so many of us are at a loss. What healthy person has all that – money, support and time? Much less someone whose health has been failing for an extended time and whose health has forced them to isolate themselves – how could they possibly have funds or friends left?
So I struggle with how to help reach across the gap to my fellow patients who lack the resources they need. I have loads of useful advice for the functioning TILT patient because that is where I am now and my needs are no longer as desperate. I can continue to share what medical actions I took that worked to dig me out of that hole, but I had that most precious of resources. I had family support and some of that family had the financial means to help me. No matter what practical and emotional information I share, I cannot give them what they need most and that I was most fortunate to have; money and family.
Having shared some of my despair, allow me to try to build some hope into this post. Maybe I have been too literal with my assessment. The online support community for MCS patients is caring and patient, like family should be. Clean air, food, and water does not have to require a huge financial commitment. A person’s determination and faith can compensate for some expensive doctor appointments and lab tests. We will all, here in our virtual spaces, continue to try to be each other’s family and hope that the money either shows up when it is needed or is worked around somehow. Linda will continue to keep us informed and Miss Diagnoses will make us laugh and Sonda will chatter away. Amelia will launch an inspirational site from down under. Earthwalker at Planet Thrive will round up huge numbers of us to share our stories and hover over us like a mother hen. HEAL and CIIN will publish and Yahoo support groups will support. Katya will put us on a map, which is a powerful image by the way. And some of us will try go into the world with our masks on and make people aware. But I still feel like it is merely a drop in the ocean and wish there were more impactful ways we could help those who need it most. Any ideas?