Wednesday, June 13, 2018

Diagnoses Divided, Where Does A Medical Apacolypse Belong?

After my 2015 lung cancer diagnosis, I found comfort and friendship within the online lung cancer community.  It was a sense of comradery.  We were all in this together.  The common adage: No One Fights Alone.

 After my 2017 Moyamoya diagnosis,  I didn't  feel like part of  my lung cancer community anymore.  I was very isolated.  In addition to incurable stage iv lung cancer, I had a second incurable disease that nobody else had or even heard of before.  With that came a new set of symptoms,  anxieties and feelings I didn't share or discuss with my lung cancer peers.  I put myself in my own category, separate from my lung cancer friends and online support groups.

I searched online for support from the Moyamoya community.  I was looking for the comradery  I found before when diagnosed with a scary,  incurable disease.  I found I was an uncommon case. My Moyamoya was diagnosed without a neurological event like aneurysm or stroke.  Because Moyamoya is so rare,  the support group options were limited.
Most of the people posting in the Moyamoya groups are parents of small children and babies diagnosed with Moyamoya or adults that have experienced strokes or other neurological events that lead to their Moyamoya diagnosis.    I couldn't relate to them on any level.  I didn't feel like part of the that community either.

I was conflicted and alone with my thoughts,  living with two incurable diseases.  I was my own with no sense of community.

I felt even more isolated after my December 2017 stroke. Not only did I survive a hemorrhagic stroke,  I recovered rapidly and continue to overcome my deficits.  I was having a hard time relating to others and their stories.

My isolation and seperations were thoughts that manifested on their own with no particular experiences or situations to cause such feelings. I was having a period of time when I needed to feel 100% understood.  But my Medical Apacolypse is so unique and complicated.  I'm the only one living with this particular
combination of diseases and stroke deficits.

The last couple of months have changed my thoughts.  I have a new sense of self and a renewed sense of community,  in all my communities.  As I was feeling isolated,  I found my stroke "twin" in an online stroke support group.  We both had our strokes on the same day.  We had similar outlooks and attitudes about stroke recovery.   Together, we explored in person stroke support group options in Colorado Springs. Through this connection I found a brain injury/brain disease support group at Memorial Hospital.  They meet once a month and each meeting has included guest speakers, tips and topics that I found helpful in my stroke recovery.

My twin connected me with another stroke survivor, Mike, in Colorado Springs.  He's now my friend, my stroke brother.   I follow his progress and accomplishments throughout his stroke recovery.  Walking is an important exercise in both our recoveries.  We recently cheered each other on during two different stroke walks. One in Denver, The Comeback Trail  5k for the National Stroke Association.
The other was this last weekend at the Heart and Stroke 5k Walk for the American Heart Association.

I was able to attend the Lungevity Hope Summit in Washington DC at the end of April 2018. I was awarded a full travel scholarship thanks to the donations from my Hope Summit Survivor Challenge.  

The trip to DC for Hope Summit was quite an accomplishment.  I utilized the  airport wheelchair assistance program, by myself, for the first time.  That was helpful.  I was able to get to my gates and make my connecting flight at O'Hare on time without any troubles.  Navigating in unknown territory is a challenge with my vision,  cognitive and executive thinking deficits. 

The Hope Summit trip was very important to me.  I needed to be with my tribe and get my sense of connection back with my lung cancer community.  Not only did I get that connection back, 
I realized the lung cancer community was with me the whole time, praying for me and cheering me on through my Moyamoya diagnosis to my surgery,  after my stroke and into my recovery.  It was still the,  No One Fights Alone adage.

Although my Medical Apacolypse is a combination of many things,  I'm learning I'm not alone.  I can break it down to my individual diseases and deficits and reach out to those individual communities.  

And on some days,  like May 6, 2018, all those communities will collide.  May 6 was World Moyamoya Day. I walked the Comeback Trail Stroke Walk with stroke survivor,  Mike, and lung cancer survivor,  Ali.