The Frontier

     Thank you to everyone who donated towards our Epilepsy Foundation so many months ago.  We reached our goal and were able to complete the march (albeit virtually) in support of patients, families and essential research.  So much of the world around us has changed in 2020, and we, in response, are also changing.  

      The emergence of a new virus has set in motion a framework of evaluations that ought not to be taken lightly.  What do we value?  What do we hold on to, and what aspects of ourselves do we present onto others throughout daily, weekly, monthly journeys?  As a human family, what can we say about how we have treated our neighbor, our loved ones, our planet, the beings we share this space with?  

       2020 has become another frontier for many people.  I, like thousands of others, suffered a personal loss to SARS-CoV-2.  I've witnessed lives destabilize as a result of the pandemic, and health suffer in response to it.  Yet we are resilient, and we will make it through, in some fashion, across this frontier.  Let us hold each other in care throughout this journey.  Good will, intention and kindness towards others remains more important now than ever before.  

Into Dust

I am writing this post to invite others into the discussion.  I realize that I have been holding onto a lot of emotions as a result of this pandemic and they are truly reflective of the collective grief we are all feeling.  The onslaught of information coming from the media as well as the progressive nature of this crisis can overpower our reality and will ultimately consume us if we are not careful.  Hold your loved ones close within reason, stay safe and be kind to one another.  I invite others to post links in the comments to places where people can donate resources, time and/or any contributions to help the thousands of people that are suffering right now.

Anger and deep sorrow.  I embrace these emotions wholeheartedly as I have done throughout my life.    They are temporary and pathways towards growth.  Through them, I shall rise again.

Into Dust

Dedication

It’s been a month since my last post.  I do apologize - when the wave hit all of us, it took me a while to bounce back and find my center again.  The news headlines are of course all feeding our fears as we struggle to grapple with a reality a number of us have never fathomed before.

I’d like to gently remind all of us (as I have begun to remind myself these past few weeks) that now is the time for compassion.  There are a lot of suffering people out there and every single one of us can make a difference.  Respect the rules, keep yourself healthy for yourself and for others, and allow your inner voice to speak to you more.  Here in the U.S. we are being asked to sit still, and we are slowly coming to realize what that means.  In other places of the world, people have run from famine, from war and from long histories of disruption.  Let us not forget our fellow humans at this time.  Stress levels will be higher, and thus our commitment to respecting our own limitations will signify an openness to self-exploration and to embracing others’ perspectives.  Do not ignore the lesson that is in front of us.  We are a global community and our world needs to heal.  Be part of that journey, and stay safe.  The people at the front lines are counting on you.

Finding Hope

Please support my fight against epilepsy!


An article that I’m sharing to combat the shame, silence and fear that often surrounds a diagnosis of epilepsy and/or seizure disorders.  Everyone’s experience of their illness is different and as human beings, our own self-understanding, individually and collectively, is unique.  Do not hide how you feel, how you see the world, how epilepsy and/or seizure disorder impacts your path on this Earth.  We are here to bear witness to the many roads we each take.  There is so much to learn from, to grow alongside, to hope for in each others’ presence.

I take a moment every day to think about what I’m grateful for.  My moods do shift a bit as a result of the medications yet I find that I can still commit myself to re-framing my circumstances in a more positive light.  I can offer to other members of this community that are suffering.  Our empathy can always be a benefit for other patients, and that itself can be healing.  Don’t ever give up.
For inspirational purposes, check this guy out!

Ordinary Joys

Help support the 2020 Boston Walk For Epilepsy!  

Thank you to everyone for your donations - I am at $205 out of $500 now.  $295 left to reach my goal, and it is not even March.  I am so grateful for everyone's offers of support throughout this journey.  The world is a tough place for a lot of people, but it also full of kindness, and I appreciate all the people that I have come to know throughout this life.


A year or two before the picture on the left was taken in Valladolid, Yucatan, I was seizing about ten times an hour.  Constant burning and warmth running up and down my right arm and into my fingertips.  Sometimes even up into my face or down my leg.  Having to leave work early for fear that this episodes would generalize put me on the EMU for the first time.  Even though I took my medications as best I could, I did suffer two tonic clonic seizures at home, and was admitted to the hospital in 2018 and 2019.  Away from the everyday obligations, work and societal pressures, I was seizure-free for a week between the dates of January 17th and 24th, 2020.  

I am back from my trip and yes, I have had some focal seizures, but I came back with a renewed sense of purpose.  I'd like to help others find ways to heal themselves and to find joy in the ordinary.  What we could call simple and mundane can also serve as a moment for reflection and renewal.  Our technology can be used for good, but we can also build more time to foster our own connection to Nature.  Meaning that we need time away from our screens, from the beeps, from the artificial walls we have built around ourselves.  There is a universe inside of us, around us and within the beings that exist alongside us.  During this lifetime, let's grow with, share joy in, and honor the connections that we encounter.  

 


One community I can recommend is Gateway Arts, an art studio that helps people with disabilities to thrive in creative careers.  It is located in Brookline Village, sponsored by Vinfen, and was an important part of my own healing process many years ago.  The Studio E program through the Epilepsy Foundation is an additional source of community and creative expression that can be especially helpful for people suffering from epilepsy and seizure disorders.  I have not attended a session through this program yet, but I encourage anyone who has to let us know how it helped them!  

Taking Care of Yourself

Help support my goal for the 2020 Walk For Epilepsy!

Adequate sleep is extremely important for anyone who suffers from epilepsy.  I haven't written in a few days because I wasn't sleeping well enough and that subsequently let to an exasperation of my seizure symptoms.  If they get too frequent then I take one of my emergency meds to stop them in their tracks, but unless I maintain healthy habits, the seizures will come back. 

For that reason, I want to mention the work of the SUDEP Institute, the importance of maintaining good seizure-management practices  and also regular self-evaluation of one's own triggers and risks for seizures.  Sudden Unexpected Death In Epilepsy is a generally unfamiliar term in numerous circles, but it is a reality.  Every year 1 in 1 million individuals suffering from epilepsy passes away due to this condition, and the causes for it still remain unclear.  What is understood, though, is that managing good practices as an epilepsy sufferer can decrease the risk of SUDEP, and controlling seizures remains essential. Not everyone has specific triggers or can always determine when and where a seizure might occur, however.  It's important to stay in contact with your healthcare team and to foster self-understanding of your own symptoms.  One way of doing that is keeping a record of your seizures, responses to medications, etc.  I use the 5-Year Seizure Diary, which was developed by a mom working to manage her child's seizures.  The book serves as a reliable way to track events, triggers, auras or any changes that help myself and my doctors to better understand my epilepsy.   

Here are some recent words from my friend Ammon:

I wanted to share a recent personal shift that has felt monumental. Contributing my artwork to medical fundraising and awareness events has felt like a full circle occurrence. Since my artwork is actually part of an ongoing story of living with epilepsy and surviving brain cancer, being able to contribute in any way to those who are walking a difficult path feels very personally fulfilling.     wanted to help spread the word of an epilepsy fundraiser that [Nati] is promoting. You will see the link below. Come and join us for the Epilepsy Walk in the Boston Common in the spring! You will see details in the link as well. 

Wishing everyone the best:)

Support the 2020 Walk For Epilepsy!

  
You can check out more of Ammon's amazing pieces here as well:

Ammon EP Society6

Exercise for the Soul

Please support the 2020 Boston Walk for Epilepsy!  

It is relatively cold outside.  While there is no immediate need for boots in my neck of the woods right now, the temperature still demands that I still wear a good amount of layers as well as adequate shell coverage, via my coat, as part of my footwear and for my hands.  

Having an illness such as epilepsy can definitely impact one's level of fitness, one's stamina and also motivation to seek out exercise.  However, I want to bring to attention a few good resources that I have found to be very helpful for people with neurological illnesses and/or various kinds of disabilities.  

Whether you are here in the Northeast or somewhere else, knowing about adaptive programs can help you to build your own connections to the community and to engage the world through exercise - something that remains essential for people suffering from epilepsy or any kind of disabling illness.  Whether it be through adaptive classes in yoga, gentle exercises in Qi Gong, skiing and winter sports, rock climbing or as a member of team-focused sports activities, there is always going to be an opportunity for people to build strength or to help their bodies and minds recover from difficult moments.  I am partial to dragonboat because it has definitely improved my upper body strength as well as my level of energy throughout the day.  

Lastly, I want to give a big shout-out to Outdoor Mindset, an organization that I came upon a few years ago that specifically builds on the benefits of experiencing the outdoors, specifically for people suffering from neurological challenges.  They have regular meet ups and encourage each other to spend time in the open air, regardless of what they have gone through in the past.  Please check them out!