Still lots to learn

Living with Kennedy's Disease provides an opportunity for learning more about life and myself every day. 

I believe "nothing comes into existence uninvited." Everything that happens in my life is a potential learning experience depending upon how I respond to the situation. 

I further believe these erroneous beliefs and misconceptions I carry with me are tested repeatedly until I eventually understand and accept reality. If I react negatively to someone's actions, it is because I still have not fully accepted that everyone is fighting his or her own personal battle.

The quotes below are from Maya Angelou, a well-known and respected author and poet.

I've learned that…

• No matter what happens, or how bad it seems today, life does go on, and it will be better tomorrow. 

• You can tell a lot about a person by the way he/she handles these three things: a rainy day, lost luggage, and tangled Christmas tree lights. 

• Life sometimes gives you a second chance. 

• You should not go through life with a catcher's mitt on both hands. You need to be able to throw something back. 

• If you pursue happiness, it will elude you. But if you focus on your family, your friends, the needs of others, and doing the very best you can, happiness will find you. 

• Whenever I decide something with an open heart, I usually make the right decision. 

• Even when I have pains, I do not have to be one. 

• I still have a lot to learn. 

The "life goes on, and it will be a better tomorrow" comment above is similar to one of my favorite sayings, "This too will pass." My father use to remind me when I was a teenager, "it is not the end of the world," when I would over react to something negative in my life. Even though I did not want to hear it at the time, he was always right. 

In addition, the "decide something with an open heart" comment above goes hand-in-hand with Plato's quote that "everyone you meet is fighting a hard battle." Just recognizing that everyone is tested in his or her own unique way makes it easier to "accept the situation and move on."

Ms. Angelou has many wonderful quotes and sayings. One I particularly like is "a bird doesn't sing because it has an answer, it sings because it has a song." I hope you understand I am singing today even though I still do not have all the answers.

One thing is for certain, "I still have a lot to learn."

Life Doesn’t End With The Diagnosis

I remember when I was diagnosed with ALS. I could not have been more devastated. Then, a few years later, when my diagnosis was corrected to Spinal Bulbar Muscular Atrophy, it was initially a relief. It did not take long, however, for reality to settle in. I had Kennedy’s Disease!

My symptoms appeared in the late 20s. I am now 70. When I look back at those first days after finding out I had KD, I have to laugh. Life did not end with the diagnosis. It began.

After the initial shock, I realized I had control of my thoughts and feelings. The diagnosis was also a wake-up call. I climbed mountains in my 40s, sailed the San Juan Islands, explored the reefs in Hawaii, hiked hundreds of miles of trails in the mountains and lowlands, and became a licensed pilot. I could go on, but all this happened after the symptoms appeared.

The redeeming feature of Kennedy’s Disease is it progresses slowly. I still have good days and bad days, just as I did before KD. I still become frustrated and resentful at times. I still lash out at others when it is meant for me. And, what is interesting about this is that these events would also happen if I did not have KD. It is called ‘LIFE’. I experience, adjust and adapt. But, I continue to live the best life possible.

Life is a journey of discovery. And, as with any person’s life, there are hills and valleys, as well as rivers and deserts, that have to be traversed. There will be good times and not so good times, but each will be its own learning experience. That is why this blog is called, “Living with Kennedy’s Disease… until there is a cure.

Photo: https://weheartit.com/entry/42876870

The only real disability in life is a poor attitude

Living with Kennedy's Disease, or any progressive disorder, is challenging. It is also a learning experience. It is easy to become caught up in the 'feeling sorry for yourself" mode. But, all that does is make life for you and your loved ones miserable.

Many years ago I came across this poem, "The Man in the Glass," by Peter Dale Wimbrow, Sr.

When you get what you want in your struggle for self

and the world makes you king for a day.

Just go to the mirror and look at yourself

and see what that man has to say.

For it isn't your father, mother or wife

whose judgement upon you must pass.

The fellow whose verdict counts in your life

is the one staring back from the glass.

He’s the fellow to please, never mind all the rest,

For he’s with you clear to the end,

And you’ve passed your most  difficult test,

If the man in the glass is your friend.

You can fool the whole world down the pathway of years,

And get pats on the back as you pass,

But the final reward will be heartache and tears,

If you’ve cheated the man in the glass.

The point of this journey is the journey itself. It can only be successful if you live in a way that allows you to enjoy the life you are given.

The Journey – Finding the Spirit to Continue On

I have written about the journey several times over the last six years. It would have been interesting if I started this blog while I was in the early days of learning to live with Kennedy’s Disease. I am certain my perspectives have changed dramatically – hopefully for the better.

Regularly readers contact me or comment on a post. I love hearing from you because it reinforces that we are all in this together. We reach out when we are in trouble. We help whenever we can. We learn from each other. And, we share that knowledge with others who are also finding their way in this new world.

Last night while transferring from my chair to the bed, I flashed on how accepting I have become of this evolutionary process I am experiencing. My daily routines are much the same, but they have been modified many times to accommodate my capabilities. When a loss of a capability first happens, there is always some frustration and angst. After the initial, “Oh no, not that too,” follows with a period of experimentation. Can leverage solve the problem? Can a tool or aid help? If none of the experiments work, the next question is can my wife do it?

Someplace in the middle of this process of discovery, I end up asking two questions –

“How important is it?”    

“What if I can’t find a solution?”

Initially, there is often the belief that I’ll never be able to survive without that. I call it the end of the world scenario. This was especially apparent when I could no longer perform the work that I loved. Somehow I survived and life went on. 

Through the forty years of the progression I learned a valuable lesson. My spirit is a lot stronger than I ever imagined. And, if my spirit is willing, I will find a way.

Acceptance allows the spirit to remove most of the stumbling blocks we face. Once they are removed, the spirit finds a way to move on with our lives. There is an old adage that is appropriate. “When life gives you lemons, make lemonade.”

There is another one I like from Alexander Volkov. “Your journey never ends. Life has a way of changing things in incredible ways.”

If you believe this, then EMBRACE THE JOURNEY.

Photo: Thehumanspirit.net