“Who are you and where do you come from?”
Because Katie was born with an L5 myelomeningocele, we’ve been part of the interrelated communities connected by spina bifida for over 28 years. Sadly and unsustainably, we have given more than we have received. We have repeatedly hoped to give and gain strength from community and have had those hopes repeatedly dashed. This lack of connectedness has provided foundation for crisis after crisis in our lives. In most ways, we’ve had to fend for ourselves. It has been a life of grief. While seeking after the strength found in numbers we have found the crushing weakness in isolation.
“Who’s at fault for this lack of connectedness and all this heartache?”
While such a question is popular the world over, we haven’t found that it really helps. Unmet needs remain unmet regardless of why. It takes time and energy to point fingers. Under the staggering loads imposed by spina bifida, we don’t have that time or energy. We’ve had to use what we have to limp along. We can’t afford the cost required to ascribe blame and engender shame even if we would want the extorted help that might tortured come from those motivations. The issues are systemic, a system of which we too are a part.
“So where are you going from here?”
For a variety of reasons, our lives are shifting. The horns of the bull no longer belong in our backs. We are asking ourselves very difficult questions, questions so unsettling that we really couldn’t ask them before. And, as obvious as it might sound, unmet needs cannot go unmet forever without consuming everything around them. Nature continues to abhor a vacuum, particularly one that sucks more every day.
“What needs are you waking to after all this time?”
Unsurprisingly, we need community and connection now more than ever. Our awakening is to the depth and breadth of the needs, not their existence. Of course there are finer details. Here too, community is the necessary context for understanding and meeting the number and variety of the needs.
“What are you going to do?”
In short, take the bull by the horns. Working with as many others as possible, we are dedicated national and international community builders. Because of…
- population size
- the nature of spina bifida
- growing medical specialization
- the need for integrated, experienced support
- healthcare economics
- government prioritization
- and many other reasons
…the individual and collective strength of the community is one of the very few wellsprings available. For some, it is the only one. We need each other. Finding each other is no small matter. In broad strokes, enabling that quest is what we’re up to.
“What about the Spina Bifida Association?”
Of course the SBA is the organization with which we have had the most non-medical involvement. We are deeply grateful for what the SBA has been, is now and hopes to be. The dedication and diligence of those involved at both the local and national levels is born of a sincerity refined in a special crucible. Our hope can only be to work as closely as possible with the SBA in the discovery of and engagement with the multitude and magnitude of needs. It is the vastness, variety, uniqueness and as-yet unrevealed nature and existence of the needs that calls us forward to the work — work of which there is no shortage.
“What do you plan to do specifically?”
Thank you for asking. The details of our plans are the subject of another document and ongoing effort. If interested, communicating with you would be an honor: