Life After Brain Injury
My anniversary for “2nd Chance at Life” is on August 6th. It has been an amazing 2 years since my SAH (subarachnoid hemorrhage) and I sincerely thank you all for the great support you have shown me!
Having actively participated in brain injury/SAH/stroke forums on-line and in person, I am more determined than ever to represent the patient voice in my professional and personal engagements. The story of a brain injury (TBI, SAH, Stroke) is complex, and many survivors feel misunderstood and forgotten after the initial trauma of injury.
No question: the immediate response matters. I had no idea that an aneurysm was waiting to rupture in my brain, and so I went from kayaking to life support… Thanks to incredibly fast action by two wonderful people, I got to my surgery quickly. After several weeks, I was out of the hospital, weak but functioning “on my own” without major problems.
When an aneurysm ruptures, “every second and every mile” counts for a part of the brain. Out of the 50% of patients that make it to the hospital (many die on the way there), only about 5% are as fortunate as I was.
Leaving the hospital isn’t the end. It is only the start of a long and difficult journey of recovery and redefinition, while often facing significant financial challenges – brain care is not cheap! The full scope of injury presents itself for months and years to come. Survivors describe the layers of injury in varying degrees, but the themes repeat:
- Ranging from “minor” disabilities to having lost major physical functions, often requiring on-going therapy/care.
- Another stroke, aneurysm…
- Compounding health problems
- Difficulty getting reimbursed for home- and long-term care slows down progress.
- Pushing oneself too much makes recovery harder.
- Hard to find help; while not able to function alone. Increasing expenses.
- Utmost exhaustion; often setting in without warning.
- Fear. Anger. Doubt.
- Emotional rollercoaster of joy and despair.
- Feeling isolated.
- Not being understood.
- Feeling Inadequate.
- Wishing to be heard.
- Wanting to be “back”.
- Support, love and patience: amazing positive connections on one end of the scale, dramatic lack of support on the other…
- Spouse/Partner/Children becoming caregivers.
- Spouse/Partner/Children growing impatient and frustrated – survivor “should be /feel better by now”.
- Caregivers burning out.
- Divorce/End of relationship.
- Friends expecting the “old me”…Pulling away.
- Reaching Out/Wishing for support (but afraid to ask)
- Those with serious disabilities, cannot return to work, period.
- Many return “too soon”, due to financial need.
- Those who look “ok” on the outside often take on an additional burden as their fatigue, headaches, eye problems… are ‘hidden’ from others.
- Many survivors report that their work environments will not accept modified hours, nor changes to work conditions that make it possible to have a healthy and productive return. Some quit.
- “Loss of trust by boss/clients that I can still deliver” – need to prove oneself. Some are fired.
Despite these extended, challenging impacts of brain injury, survivors share a strong wish to support one another, and to contribute to their communities.
We seek for understanding, courage and guidance from one another – increasingly on-line – and in doing so, we become a part of a global life line and force for positive change. In these groups of “total strangers” connected by injury, we are “seen” for who we are. Through the support groups:
- Our experiences are accepted and validated.
- Our questions find responses – even when the same question has already been asked a million times. But “my turn” for that question is here and now… And we all honor it.
- Our fears and frustrations can be safely expressed – without guilt or escalation or “fixing”.
- Our hopes are nurtured by the collective journey: everyone in different stages, rooting for one another.
- Our small and large victories are celebrated alike: giving us the courage to go on.
- Our setbacks and losses are acknowledged for their great sorrow, with dignity and respect.
- Our tears and smiles, messy hairs, crazy scars, coils and stents make us beautiful.
- Our deepest thoughts and feelings find their way to words and moments of silence.
I am proud to be part of this community of highly spirited people and I applaud the leaders of the support groups for all their great efforts to connect us across multiple boundaries.
For those of you who are in the healthcare field, please engage us in advancing care options and support, when:
- Defining what patient centricity means for your organization
- Designing innovative workforce programs for people with disabilities (some of our disabilities may not be visible but they are real)
- Developing new medical products
- Rethinking care programs and reimbursement, or
- Creating new educational programs, outreach and community support
And most importantly: Reach out to us for an authentic connection! You need not go far… simply need to look around: we are your family, your friends, your neighbors, your co-workers. See us for who we are. For what we can offer. Not for what we have lost.
Brain Aneurysm Recovery
August 15, 2018