Hello! My name is Sandra – though I go by the nickname I was given as a toddler, Peppy. According to my mother, the name came about because the cartoon character, Pebbles, was created in the same year I was born – 1964. Because, as a toddler, my hair was always fashioned in a pony-tail sticking straight up on my head - just like Pebbles – mom said she started calling me Pebbles … only on the German side of my family, it came out Peppy … and the rest is history.
Actually, I guess my personality had some aspects that lived up to such a moniker. Though I had a quiet, shy side there was also a little rambunctiousness – a love for everything outdoors … swimming, biking, hiking/walking, water sports, tennis, soft ball … you get the picture. Of course, aside from all those interests, I loved dancing. In fact, my older sister said she used to get embarrassed because it didn’t matter where I was – if I heard music, I started moving!
I share that part of my background because it speaks to the active lifestyle I continued to enjoy long after leaving my teens and became a part of my marriage … my husband and I were avid tennis players, tossing a baseball back and forth, taking walks, etc.
Then, in my 30′s, and out of no-where, I started experiencing some problems with my right foot. Well, after progression of more symptoms and testing I was eventually diagnosed with Amyotrophic Lateral Sclerosis (ALS) or more commonly called Lou Gehrig’s Disease – after the great baseball player of the 30′s known as “The Iron Horse.”
To say I/we felt devastated would be putting it mildly. We were told there is no known cure and death results after the respiratory system becomes paralyzed or an aspiration pneumonia due to swallowing issues. The books say death usually happens 3-5 years after diagnosis; however, that is not the case anymore as more and more of “us” are choosing to have a tracheotomy and use artificial ventilation along with having a feeding tube. I have a trach and feeding tube – both have extended my survival, allowing me to continue embracing life with laughter, determination and cherished relationships.
My eyes have been opened to the pitfalls that await everyone involved in the life of someone dealing with a terminal illness. I have discovered so much about myself – about the person I thought I was – and about the relationships in my life. It is true, illness will either deepen marriages or they fall a part … and I have been amazed at the number of ‘Pals’ (people with ALS) whose mates have walked upon diagnosis. It seems illness has the same affect on friendships. I think I have struggled more over the impact my illness has had on my relationships with friends then the illness itself.
I had been determined from the beginning to not allow myself to be defined by my disease … I didn’t want to use it as some sort of crutch or excuse for snotty behavior. So, as is typical Peppy-style for dealing with uncomfortable life situations, I tried to act as though nothing was wrong. It worked for awhile, but then, there came a point I realized I had to confront myself and my relationships. I had to do what was needed in order to maintain a measure of ‘Quality of Life’. And I found so many “life lessons” awaiting me while travailing this journey I had been thrust on! The lessons have expanded in scope with my recent diagnosis of Breast Cancer and subsequent mastectomy. I know, you’re thinking “Hmm, a feeding tube, a trach and now missing a … this is one neat looking chic!”
I am fortunate to have my husband, my best friend, accompany me on this journey. We are tackling each mile-stone, each road-block as a team and our weapons of choice are laughter- plenty of laughter- good friends and family, a well-made martini or glass of Pinot Noir or Merlot … even a few tears. I have learned the value of honest, open communication with those we love – the need to allow a person weighed down with grief, whether it is from a serious illness or any other life trauma, to share the feelings without interruption. On top of all that I have been learning within my personal life and relationships – I have been left speechless, no pun intended (because I am speechless due to ALS) from interactions with strangers! We are not a society comfortable with anything or anyone who is on the fringes of what society defines as “normal”, “beauty”, “acceptable”, “fit in body”, etc.
That is when I decided to share my experiences through blogging. It is my hope that anyone reading my stories could glean something of value – of benefit – that fits, in principle, to something they are having to deal with, work through, endure. I hope I don’t come off arrogant – as though I think ”I know it all” … though my family will gladly tell you that is exactly how I can act. Actually, I guess a big dose of that attitude plagued me most of my youth, however I do think illness has “shown me up for what I really am”.
I will close with a genuine “Thank you” for your taking the time to check out my blog. I hope you will return from time to time to read my latest “blog thought”. And, if you have any questions, please, don’t hesitate to ask or if you just want to leave a comment – I will certainly appreciate hearing your thoughts or answering a question.