Showing posts with label living with disabilities. Show all posts
Showing posts with label living with disabilities. Show all posts

Wednesday, February 22, 2017

We are Overlooked Assets! #Marfan #EDS #LDS

Sometimes we as a nation can't see the trees for the forest.  When people make fun of those with disabilities, that jesting can foster cultural underestimations of talent values.
Connective Tissue Challenged Persons.  We are assets!

In the last week I've been declined for life insurance and jeered at while driving along with the other typical situations someone with a health challenge encounters daily.  Our van has a disability tag and I purposely drive the speed limit.  Other drivers often gun their engines to pass me by, blowing their horns loudly and usually flipping fingers my direction.  This week a man about my age rolled his windows down while flying by and twisted up his hands and face as if he were having a seizure then laughed as he sped on into the traffic ahead.

Today I take it all with a grain of salt assuming these people are probably having a really stressful day, pumped up on coffee and probably dealing with dangerously high blood pressure.  I am very happy with who I am, health challenges and all.  In fact I think my health challenges make me special.

Not everyone I encounter treats me this way.  Many are courteous, notice I am walking with a cane and treat me with kindness.  My doctors and nurses and their staff seem to really care and for this I am grateful. But our alpha nation, in its fast paced bootstrap mentality often treats those of us with pronounced health challenges as a discardable class.

Attitudes of disregard for the disabled can even be found in our governments.  Since my dissection in 2011 I've had my drivers license medically revoked and I've even been handcuffed, threatened and put on the ground by Flagler County Florida sheriff's department, hands on their guns and tasers as I walked to the grocery store one afternoon with my cane, a limping man that was an obvious threat to society.

Inevitably within the business community my resumes are politely returned, with a thank you but not interested response once my dissection issues surface.  Some say don't disclose the issue but I believe in transparency and it is hard to otherwise explain away the hospitalization time gap.

The 'forest' of mis-information and unfounded assumptions surrounding people with disabilities masks an amazing pool of talent though.

Over the past five years I've come to know others living with connective tissue challenges, aneurysms and dissections, scoliosis and pumphead, chairi and other conditions.

They are some of the most ingenious, brilliant, kind, enthusiastic and talented people I have ever known.

They are also surprisingly some of the healthiest persons I know, despite walking a fine line between life and death in many cases.

And they are certainly some of the most shrewdest and analytical persons on the planet.

Our communities, our nation and our world would be so much better off taping into this talent pool instead of pushing us to the side.

When living with a life threatening issue one realizes that time is truly borrowed and holds great value.  We can be better time managers than the most productive wall street executive for we know the value not only of each moment but of each breath.

And in spite of our challenges, many of us are more healthy than most.  Our diets are focused on  non-processed foods while we avoid inflammatory, artery clogging junk.  Our CT scans may reveal a dissection flap but they also reveal clean arterial pathways and healthy organs.

Yes, we may have physical or mental limitations but we've learned to adapt a better way and work around those issues.  Adaptation is a key component of long term evolution and survival.

Our awareness allows us to deal with and address our limitations - giving us an advantage over many of those who like the ostrich with its head in the sand, don't know what their arteries look like or haven't been to the doctor in a long time.

Besides, as someone recently reminded me, all of us are dying.  Those of us with diagnosed health challenges are just more keenly aware of this fact.  We are some say, better prepared than most when an incident occurs and in the meanwhile make the most of our allowed time.

Because of our focused efforts on our health I would suggest that we are a better class of individuals to issue life insurance policies for, rather than being rejected time after time for 'heart conditions' or other generic but unsubstantiated factors.  Yes we've disclosed these limitations on our applications.  They may sound 'un-insurable' at first take. Yet I still contend those of us with health challenges may be a better insurance wish than those in the population who appear healthy but may be walking time bombs themselves.

Over the years I've met some of the greatest artists, poets and well read intellectuals who each battle with serious or debilitating health issues.  There is an amazing pool of knowledge and creativity waiting to be tapped by a society willing to embrace differences.

And we would make the very best of employees.

All we need is a chance.

But the life insurance rejection letters, the returned job applications, the brush-offs, dismissals and cold shoulders, exhaust smoke and fingers still keep coming.

Fortunately, we are a resilient group.  We don't give up easily.

Many of us describe ourselves as 'survivors' or 'warriors', a fitting description for a group who have experienced trauma and difficulties most can not even imagine, and come through to the other side with strong fortitude and unspoken yet perfected resilience.

The world would be so much better off if this pool of talent was brought into the fold instead of being pushed to the side.

We truly are an overlooked worldwide asset.

And so we ask the world to take note of what we can offer.  We ask all the support organizations out there that provide us with wonderful resources on our afflictions to also advocate for our acceptance into mainstream society.

Those willing to take a risk on us will be rewarded far beyond their expectations.

Living a life challenged by connective tissue issues, cardiovascular and skeletal, vision and other maladies is the best training ground for human creativity and enlightenment.

All the world has to do is to ask for our help.

And if they don't then they'll be missing out.







Sunday, July 6, 2014

Connective Tissue Challenges, Learning to Live All Over Again

Someone started a rumor long ago that says you can't teach an old dog new tricks.  I say, "it depends on if they have a connective tissue disorder and how bad that dog wants to live".

Living with a dissected aorta - my descending dissection #Marfan
My present mission is to stay alive at least long enough to see my two teens able to support themselves and to enjoy life with my wife, Judy. That is pretty significant incentive.  I sure hope this is possible but I have to be honest and say that each day I wonder if I am going to be able to make it or not.  There are so many common, every day things that can seemingly push me towards the final edge.  

Living with a dissected root to foot and up into my kidneys, aorta and a HUGE false lumen that floats around inside the main blood vessel, requires me not to strain, lift or otherwise exert myself.  Surprisingly this is much harder than it sounds.  You'd think, OK, just don't lift or strain too much.  Yeah, right.  Open this peanut butter jar for me.

It is not the hour long weight lifting outings or intense home remodeling or green roof construction activities that I've already given up that present those unexpected aneurysm dangers.  Rather, it is the little things in everyday life that I have the most problems with.  Unfortunately I don't find out about just how I am hurting myself until after the fact and my chest starts becoming tight and my aorta begins hurting again.

After living with a Dacron graft and St. Jude valve for two and a half years I am still learning new tricks.  This dog has finally come to realize that there is no going back to the old way of type A living.  Today's life is centered around measured movements, cautious exertions, decreased activity duration and cardio instead of anabolic muscle approaches to exercise.

Tightness, aching and jaw, chest and back hurt are all still fresh memories haunting everyday life.  I never again want to experience the unzipping feeling radiating down my body as the intima wall separated from the other two aortic layers.  Today, I have very similar pain events occur out of the blue, though nowhere near as intense, whenever I put stress on my cardiovascular system.  So I have to learn to avoid cardiovascular stress of any type.

But these 'instigating events' sometimes are activities one would never expect to be potentially responsible for a future dissection or aneurysm.  Simple stuff, like taking the garbage out or moving a piece of furniture (hey dollies were invented for a reason).

Today I know I can no longer jump up from the couch and hoot or holler when a sports game is on television.  In fact, after the last few college football seasons and the Florida Gator's not so stellar performance (but hey, Go Noles!), I do not even turn on the television to watch games.  In fact I do not turn on the television at all.  There goes a bunch of cardiovascular stress out the door.  Now I blog.  New trick.

Today I must watch myself when sneezing or straining on the toilet.  Too many people have kicked the bucket on the loo; even some very famous people.  Thanks to daily organic psyllium fiber all things run much more smoothly now.  Yet the sneezing can't be avoided.  I just hold my chest tight when sneezing though I am sure that clasping my chest tight is not going to hold my pulsating internal supply hose together if the sneeze is big enough.  

Today I can't work on my bike like I used to be able too.  One of my pedals needed replacing and as I tried to loosen the proper bolt with an open ended wrench I felt that old familiar pain returning.  Stop, take a deep breath and think.  I must learn new tricks.  I can not strain like I used to.  My teenage son though can help me and the use of cheater bars and levers can make the job much less stress intensive.

Today I can not jerk on weed eater or lawn mower starter handles.  Upper body rapid upper chest movements while straining are a trigger for dissection according to Dr. Lars Svensson.  But this old dog here has found that today's electric weed eaters and lawnmowers are, especially with their 56V batteries, amazingly capable, lightweight yard machines and best of all they just require a button's push.

No more working on the car, but it is time for the teen son to learn anyhow.

Those darn random firing red-light camera flashes used to send adrenaline surging through my body causing the blood pressure to soar when I was driving.  Now, without a driver license I don't have to worry about keeping my eyes on the road.  No more gripping the wheel so hard the veins on my neck stand out.  No more yelling un-intelligible, sloberish words out the car window and hitting my head on the frame as I offer up evil hand gestures.  Much less stressful to walk or ride a bike.

No more scuba diving into caves.  Sometimes I wonder about the summer before I dissected.  I was diving in a tiny vertical cave shaft well over one hundred feet below the surface with hardly any room to even turn around.  Or those times I would free dive down into the west sink in Promise Sink, swim through the connecting cavern about forty feet down and come back up in the adjoining east spring.  Or those times in Peacock Springs where we'd dive straight down through fifty feet of zero visibility algae blooms to finally break out into a crystal clear basin full of alligators resting on the bottom of the cave opening.  What a rush!  And my aorta held.  Lucky I did not dissect underwater.  Today I lay on the beach and watch flocks of prehistoric pelicans glide seemingly motionless overhead, a much easier cardiovascular activity than equalizing pressure in one's head underwater or becoming tangled up with a dive partner scrambling away from large underwater reptiles.

No more eighty pound bags of cement.  No more forty pound bags of compost.  No more ten pound bags of ice.  Doctor says two pounds max.  Ugh, this is a challenge.

But the cheater bars (a long hollow piece of metal used to gain leverage - not a place to find alcoholic beverages or wild women), levers and teen help works.  The teen's echo shows dilation has started though, so the teen help will be limited and cautiously monitored.  This old dog is learning some new strategy.  Will it be enough to keep me alive?  I think where there is a will there may be a new trick.  

Connective tissue challenges might cause all sorts of hullabaloo but they also present all kinds of opportunities for learning to be creative.

So for all you out there with special challenges, Be Elite.  b31337.  We are the magicians.