Reflecting on my college years, it is evident that my myopathy was progressing. The deterioration was not obvious until after I finished all of the course work for my masters and it was time for my clinicals. Even though I tried, I could not perform the physical demands required of a speech therapist in today's work force. My first clinical was in an elementary school; it had only one floor so I did not have to navigate stairs. I used a mobility scooter in order to keep up with the pace of a large case load. I escorted children to and from therapy and safety of the children in the halls and therapy room became an issue. I did shadowing in nursing homes, and I saw I would have to physically support some patients which I could not do.

Since I had already completed the rest of the program (successfully with a 4.0 GPA), I decided to ask my professors for an alternative curriculum, and they agreed with the understanding I would not be licensed as a speech therapist. However, I will never forget the standing ovation or the tears in my family's eyes as I crossed the stage using my walker.  

After graduation, I began my job search focusing on one in academia. I sought support from the medical field in order to keep as much physical ability as I could, and began physical therapy. We discovered that my myopathy did not seem to affect my heart but affected my legs as well as my diaphragm, which affected my breathing.

I got a part-time job as a tutor for Eastern Kentucky University's Upward Bound program.

On March 11, 2012, I was cleaning the kitchen counters in my family home and fell and broke my left leg in three places. Surgeons put in a metal rod and screws in my leg. I was stable and all set to go to a rehabilitation hospital two days later when I went into respiratory distress. I contracted pneumonia in both lungs which further weakened my already weak diaphragm.

During the next 20 days in intensive care, I was given a tracheotomy and put on a ventilator. I was then transferred to Cardinal Hill Rehabilitation Hospital in Lexington, Kentucky.  After six weeks there, I was able to be off the ventilator during the day and take a few steps with a walker.  

I went to live with my grandmother.  There, I developed a routine that included physical therapy, occupational therapy, breathing exercises, and doing a two-hour “recharge“ on the vent in the afternoon. I could walk about 1,000 feet, and get around the house with my walker, but I could not return to work. 

It was about a year after I left the hospital, that a speech pathologist whom I saw for a follow up medical appointment introduced me to the Blom tracheotomy tube system.

The Blom tracheotomy tube system (pulmodyne.com) is a trach and cannula tubes that are uniquely designed to allow someone using long-term ventilation to talk. It is not necessary to have your cuff deflated. I keep mine inflated because it is convenient not to have to fiddle with it, and it makes less wear and tear on the trach.

I prefer the Blom for two reasons. It is much more comfortable than my former trach, the Shiley. Secondly, the Blom allows me to communicate much like I did before I had a tracheotomy. For me, it is much easier to speak. My friends and family members comment that I sound like my old self and that my personality is back. At times, I have even briefly forgotten that I have a trach.

A month later, I started falling more even though I got around the house with a walker. In a six week period, I fell 26 times. It was too much for just one or two caregivers. I needed a safer and better equipped environment. After calling around to local nursing homes for possible admittance, we were referred to Rockcastle Regional Hospital and Respiratory Care Center, in the small Kentucky town of Mt. Vernon.

I was hesitant at first because of my ideas of what nursing homes were like from places I had witnessed during my schooling. I imagined being a 31-year old surrounded by elderly with dementia. I also was not thrilled with giving up any of my independence I had left, such as where I go and standing up and walking

After being at Rockcastle for a while, I like it and feel safe.  I use the Newport HT 70 at night and during the day whenever I am feeling badly or overly tired.

There are residents of all ages with a vast array of conditions, such as muscular dystrophy, stroke and injuries from a car accidents - everyone has a tracheotomy and is on a ventilator. It is like one big family (actually some staff members are related).

We are encouraged and assisted to get up and out of our rooms. If not, beds are rolled out to one of the day rooms where ventilator users can visit, watch TV, or just watch people go by.

As a resident, I and my family are always involved with any decisions about my health. I serve as president of the resident council made up of resident members and some staff that meet once a month. Anyone can attend the meetings and voice concerns or ideas they have. Problems can also be mentioned to council members privately.

My myopathy has progressed.  I am in an electric wheelchair and no longer walk, but

I get physical therapy and work on occupational therapy exercises.

Here I can interact with 93 different people, ages 1 to 90, who are facing a similar situation. With the help of the staff, we support and encourage each other. 

So as Auntie Mame says, “Life is a buffet and most poor suckers are starving to death.” I have no intention of being a poor sucker.