struggling with being ‘disabled’

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Going from a very corporate environment in the wine industry, and working 70+ hour weeks, being tied to your Blackberry 24/7 and organizing big wine events most weekends while battling a major illness finally took its toll December 11th, 2008.  I began chemotherapy to treat my rare form of Uveitis (a form of inflammatory autoimmune eye disease), and had severe vertigo, rendering me completely unable to stand, let alone work at my business’ busiest three weeks of the year.  I felt hopeless, helpless and like a 1000 pound burden on my employer and colleagues.  At a time when I was needed the most, my body was letting us all down.  

Fast forward 5 years, and I still struggle with this ‘burden’ and guilt over being unable to work full time at my chosen profession.  Since 2009, I have undergone 14 eye surgeries, each more complex than the previous one, to try and save my dwindling eyesight.  My adrenal system and thyroid have shut down due to complications from medications and surgery, and my migraines and Irritable Bowel disease make leaving for a 9-5 job almost impossible. I attempted to go back to work for over a year before finally throwing in the towel as my doctors insisted I was spinning my wheels and would not get better if I insisted upon working the hours I did.   Like most people battling chronic illness, I have good days and bad days.  Most days, I get out of bed, get suited up, and head to the gym.  These are truly the best days I can ask for.  

I get lulled into a false sense of security in thinking that ‘things have been stable for a while.’  For instance, I was training for my first regional championship as a paratriathlete this fall when I went into my glaucoma specialist for my biweekly exam to discover that my intraocular pressure had skyrocketed almost overnight and that I needed emergency surgery that would cancel my racing plans.  I was devastated.  Just when I began to feel confident that living a healthier, gluten free, dairy free, daily exercise kind of lifestyle would keep my whole body from fighting itself, the other shoe drops.  

I have had three procedures since September to correct the emergency surgery that was so desperately needed to save the eye.  The eye and glaucoma in young patients is particularly tricky to manage due to our tendency to scar rather aggressively.  I am one of those unlucky patients. 

My guilt however occurs when I think how i would give anything to be back in an office, making things happen and being a financially contributing member of society.  But how can I work for an employer when I can only promise  out of a 20-day work month a possibility of two and a half ‘good days’ a week?  Who would hire a person like that?  Saying, “Maybe I’ll be there tomorrow, maybe I won’t, doesn’t exactly strike confidence in the minds of a potential employer.  The disabled become shut off from the working members of society for exactly this reason.  Our broken bodies simply won’t let us commit.Image

My ‘way around’ this frustrating obstacle has been to spend my time in between feeling healthy and training as a para triathlete and feeling sick and being hospitalized or having major medical issues is to volunteer.  There is no better way to ‘step outside of yourself’ than to feel like you’re contributing to others in a meaningful way.  I help the Lion’s Clubs by selling grapefruit and public speaking and fundraising, I volunteer for Near and Far Aid to help grant money to 100 need-based charities in Fairfield County, including battered women’s shelters and the Voluntary Services for the Blind.  I am the Graduate Ambassador for Guiding Eyes for the Blind, helping raise tens of thousands of dollars each year for the Guide Dog School that gave me my independence back in the form of Elvis. And finally, I love being a part of the team that helps the Challenged Athletes Foundation and Team Red, White, and Blue, helping disabled and able bodied civilians and veterans reintegrate into society through physical activity.  

All of these organizations have ‘filled up’ the time that I would have spent working the past three years I have been home as a disabled person.  Yet, I still have that gnawing desire to ‘get back out there’ and buy, sell, trade and negotiate my way around a major wine retail operation, and speak to large groups in the forum of wine education.  While I ‘get my fix’ by helping out occasionally at my friend’s shop and co-hosting wine events, it’s not the same as knowing that I can commit to being somewhere each and every day because I am healthy enough to do so.  Today, as it is, I’m letting a friend down on a charity event tonight.  I should BE there, wining and dining donors, schmoozing, and selling wine.  But I can’t.  And for that I feel utterly let down by my disease.  

So for those of you who believe that the disabled population is ‘sucking off the teat’ of the US Government, remember this post, and spend some TIME talking to a person with a major illness or disability, and ASK them how bad it feels to be in this position at all, and how badly they WANT to be ‘back out there’.  The socialization alone is enough motivation to try to push through pain and meds and doctors appointments.  But think of it this way.  If it takes me TWO HOURS each way to get to Yale Eye center, and I have to be there twice a week, and each appointment lasts two hours at minimum, WHO would hire me?  If I’m in the middle of working on a major deadline sensitive project, and I have an emergency, WHO will take over the project?  Until there’s a good solution, I’ll stay on my path through surgery after surgery, and hope that eventually my disease is managed well enough that I CAN be a great asset to a company full time.  In the meantime, I’ll volunteer, and continue to consult in wine and public speaking where I can.  Why?  Because it makes me FEEL good.

 

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