Rants and Silver Linings

TILTed gap

The Sunshine Skyway Bridge which crosses a very big gap.  I am using it today as a metaphor.  Though sometimes I drive across it and then I am glad it is an actual bridge.

The Sunshine Skyway Bridge which crosses a very big gap. I am using it today as a metaphor. Though sometimes I drive across it and then I am glad it is an actual bridge.

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?

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4 thoughts on “TILTed gap

  1. Awww, thanks for the mention! 🙂 I have been thinking about this issue recently in regards to a friend who has MCS and lives near me. Yes, living in NYC with MCS is not ideal. But she has a rent-controlled apartment on a tree-lined block next to a huge park, and she gets benefits that pay for fragrance-free personal assistants (she gives them a list of safe products). The problem? Her neighbors use incense, Febreze, roach spray, and perfume, and one smokes. The super messed up some work in the apartment so half of it is always too cold or too hot. I have no idea what to do for her, since she does not have the resources to move. Also, if she left the area she would be far from everyone she knows, so she is conflicted. She has recovered somewhat from when she first got sick (a long time ago), but the frequent exposures mess her up, and her neighbors are not accommodating to say the least.

  2. Thank you for caring and sharing…

    I’m a bit overwhelmed by the amount of unnecessary suffering that is caused by the lack of medically required safe, non-toxic housing, or other necessary supports, and the systemic discrimination that exists for those of us who are injured by toxic chemicals and harmful levels of wireless radiation.

    While I am optimistic that this will change, as more people become affected, there are so many people who are very sick and in need of practical help now, and sometimes an encouraging note to “hang in there” does not seem enough.

    That said, we can’t live without the encouragement and some kind of emotional support from people who do “get it”.

    We need foundations who can give grants (like reshelter does when they have the funding) as well as trained advocates who can try to locate resources for people who are unable to find what they need themselves.

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