The View from Someone Else’s Boots, "My Personal Road to Having a Disability"

Hospital Hallway

As many of you are aware, I am a very proud US Navy veteran, diversity practitioner and a blog-writer with GettingHired.com. My articles have always been centered on issues that apply to military veterans that are reintegrating into the workplace. I also write stories about different forms of disability legislation, employer compliance mandates, common challenges for transitioning vets and other issues impacting the disability community. But ironically, writing about disability - never prepared me for the odyssey of truly going through the experience of developing a disability myself. 

I would like to share my personal journey into the world of having a disability with you. It references issues like many of the things that I am accustomed to writing about such as: treatment, disclosure, medications, impairments and finally, experiencing the dramatic transition of becoming a person with a disability.

The Day that Changed my Life

On Saturday May 23, 2015 around 3pm, I was making the bed and preparing for what I thought would be a normal weekend afternoon. I was looking forward to running my usual errands, watching television and having my step-son return home from college later during the day. I had no indication that this day would forever change my life and perspective on disabilities.  I have always been a person with hypertension and high blood pressure, although at age 50 years old (and being a newlywed), I had every reason to believe that I was in the prime of my life, almost feeling that I would was somehow 'immune' to having any significant health challenges. I would exercise periodically (perhaps going to the gym once a week at best) and throwing in an occasional workout with weights. As a former collegiate athlete, I always assumed that I was in relatively good shape. Prior to this weekend, I did notice that I had some unusual 'edema-like' swelling around my ankles and that I had a difficult time getting a full breath when I was tired (especially at night). I considered it just an aging situation and simply wrote the symptoms off. As my wife would tell anyone, I was just a MAN in denial of my health situation and somewhat fearful of seeing the doctor, unless it was an emergency.

It wasn't until that Saturday afternoon, that I developed the strangest feeling... it was so unusual that I initially had wrote off the symptoms. I felt as though life was moving in slow motion and that I needed to sit down and gather myself. My wife was in the shower, having a general conversation with me - when she noticed that I did not respond to her question. She repeated the question and stopped her shower. Not realizing if she said anything offensive to me, she inquired if I was alright and repeated the question again.

Eerily I felt that I could answer her question, but I could not voice my words. Fortunately, she was intuitive and instinctively knew that something was wrong. She asked if I wanted to go to the nearest hospital. She then followed up with a call to the ambulance and spoke with someone from emergency (although I just thought that I needed a little time to gather myself.) In about 5 minutes, I found myself in an ambulance, diagnosed with a potential stroke, on the way to the hospital.

In Denial

At the hospital, we spent about 2-hours performing several tests and finally it was confirmed that I had indeed experienced a stroke. The CAT scan also revealed that I had a minor brain aneurysm and I was immediately given a Tissue Plasminogen Activator (TPA), a life-saving clot-buster medication. Astonishingly, I was STILL IN DENIAL of my condition, I just wanted to go home and finish my weekend routine.

I can admit that I was an unruly patient, until the doctor finally explained that I was extremely lucky that I lived so close to the hospital. After feeling like it was something of a dream, I suddenly realized it was really happening to me. I actually had a vision of myself from the third person perspective, sitting on the hospital bed and realizing that this was not a joke. I was in the process of being transferred to Johns Hopkins Hospital for additional treatment for a stroke. It was unbelievable to me!

During my time at Johns Hopkins, I could not leave my room, nor entertain my appetite with anything other than the hospital food. I found myself unable to speak clearly and it seemed like I had amnesia of all of the words that were in my vocabulary. I was told that because of my condition, that it was normal for someone to lose track of their vocabulary. The strange dramatic speech impairments had me feeling somewhat helpless. I had never needed help to express myself.

My sense of coordination was totally lost and I felt dizzy when walking for a period of time. It was a dramatic feeling for me to be contained in the hospital and during my time there, I felt like I was never going to be able to leave. I also noticed that my left hand and knees would suddenly shake uncontrollably. Despair had eventually creeped into my mind during that period. After being awakened night after night with needles and IV's for (a very long) 2-weeks, I was finally released to go home.

After my 2-weeks of hospital stay, I was reintroduced to the outside world and it was an amazing experience! Until this time, I was unable to see the sunlight and it was refreshing. I was like a kid again, feeling like I could ride in a car, let down the windows and be free. I was still hesitant to wear my defibrillator vest because I felt embarrassed.

After a month of being home (and being bored) I was anxious to get back to work. I wondered what people would say about me after my extended absence, or if I would be marginalized and face stigma. I found myself having to apologize in the beginning of my conversations because of my speech impairments. I was unable to concentrate on two things simultaneously, such as the radio playing and a person speaking to me. In many ways I wanted the world to slow down because everything seemed to be going way too fast.

As a professional writer, speaker and radio talk-show host, I wondered how I could function in my life. I was very insecure (especially when I wanted to say something.) I grew tired and very irritable with asking people to slow down with their speech and losing my vocabulary mid-sentence.

A New Start

After a while, I began to really understand how people in public perceived me. Here I am with no visible signs, but with significant speech impairments. I would often have to explain to people in advance that I had a stroke, only to get some understanding. I realized that people viewed me as fragile and incapable. I would occasionally lose my memory and would appear angry and cantankerous. The hardest part of my experience was being patient enough with myself and learning how to drive again after 3-months of returning home. I find it very interesting how we can take common things for granted (something as simple as driving) until you can’t do them anymore.

Nowadays I am recuperating and reintegrating back into my old routines. I still have challenges, especially when I try to speak. But the situation with me having a disability offers me more insight into the world as someone that is getting back into society. I have spoken with many people that have had strokes and have experienced symptoms a lot more alarming, such as paralysis or not being able to speak at all. Nonetheless, I am more thankful for everyday that I spend on the earth and I try not to take anything or anyone for granted. I am thankful for the experience and I am proud to be a person living with a disability.






### 

Ed Crenshaw is a US Navy veteran, diversity practitioner, disability subject matter expert and creator of the innovative “Preparing Employers to Reintegrate Combat Exposed Veterans with Disabilities” (P.E.R.C.E.V.D.) diversity training program. He is also the author of the books, “The P.E.R.C.E.V.D. Principles” and “The Employers Guide to Understanding Hidden Conditions Related to Suicide.” As a well-renown professional speaker, Ed is a passionate champion and respected advocate for people with disabilities.