Kindergarten? Relearning How To Live After a Life-Altering Diagnosis #AtoZChallenge

Kindergarten?      Relearning How To Live After a Life-Altering Diagnosis     #AtoZChallenge

When one learns of the diagnosis a significant chronic illness or injury, oftentimes they must learn the basics of life again. What do I mean, you may ask? Let me try to explain.

In kindergarten learn how to live and function among our peers and in the world as a whole. We learn increased balance and movement, more effective communication skills and how to use words to convey our thoughts appropriately. We learn how to work and play well with others. We learn the importance of self-care through naps. The last one may sound silly but bear with me.

When we are diagnosed with a life-altering illness or injury we are suddenly faced with a number of challenges. First, we need to learn how to live and function again, given our new situation and our new limits on our ability to function as we have become accustomed since we were young children.

We must learn to communicate with both our peers as well as those who are charged with our care. We must learn to do so in a clear, concise, way. While we are trying to learn how to communicate things our mind and body have never fathomed before, we must also learn to do so in an entirely new language. A language whose subtleties often elude those who have studied it for years to become the professional charged with your care. Not only are we, as patients, expected to learn and use it proficiently, but one without so much as a tutorial, Rosetta Stone, or even Cliff Notes. Further, our family and friends who participate in our care are also required to learn it, and use effectively use it to help us describe our symptoms that frequently even our physicians fail to understand fully.

We must become experts at pleasing our caregivers in order to achieve an appropriate diagnosis, treatment, and care. While we may become so frustrated with our inability to communicate the symptoms that we don’t truly understand how to describe, we may become so extremely frustrated that we feel like throwing a tantrum. However, we learned in kindergarten that this behavior is not appropriate nor acceptable. Pleasing our caregivers can apply to submitting to treatments you may not want in order to be able to rule out the provisional diagnosis so that you can get back on track towards finding the proper diagnosis.

We must deal with the very real loss of many of our former friends who fail to have the capability to understand or deal with our current medical situation. We must further learn how to make new friends who not only accept us as we are but often have a firsthand knowledge of our predicament. We must learn how to deal with the frustration, anger, denial, and flood of other negative emotions through constructive means. These may consist of talk therapy, biofeedback, stress management, or even such things as art or music therapies. This consists of learning a whole new way of life. A life we learned how to live when we were young children. Now, it seems, very little of that pertains to your new life.

All of the things we once took for granted as normal from a very young age, suddenly seem to have little bearing in our lives. Suddenly we find ourselves struggling both emotionally and physically to function from one day to the next. Then as if the injury isn’t enough, we are further insulted by being unprepared to manage our health in a system that requires us to be our own best advocate by doing our own research. This is one of the primary reasons I am so passionate about patient self-advocacy and empowerment.

Do you have a story you’d like to share about how you adapted to a new lifestyle after a life altering diagnosis? Please let us know in the comments below.

12 Replies to “Kindergarten? Relearning How To Live After a Life-Altering Diagnosis #AtoZChallenge”

  1. Visiting from A to Z. All I can offer you is a second hand story. My father suffered a head injury in World War II; he was flown back to Massachusetts General Hospital in a coma. My family was never really forthcoming with details; I know he recovered from the coma and was eventually given a medical discharge from the Army Air Force, but the injury left him suffering from seizures for the rest of his life. Back in the 40’s there was little support for people with TBI’s, I understand. He was left with a disability check and a “good luck”. He had problems holding down jobs. Eventually, there were drugs for him but they all had side effects, including sedation. It was only as an adult, becoming more involved in the life of my autistic brother in law, that I began to get glimpses into what he must have gone through. What you blogged about must have been part of it. He’s been dead for over 30 years now, but my respect for him still increases.

    1. Thanks so much for sharing your story! Unfortunately, even if we are heavily invested in someone’s care, the intricacies of what they go through can often remain hidden from us. To put it even more simply, as a child I would do something that upset my parents. Though I thought I understood why it wasn’t until I was grown and had kids of my own that I truly understood why they felt the way they did. Until we experience something for ourselves, it may well be impossible to totally grasp the nature of the situation. We can do our best to understand and comprehend it, but we often will find our understanding lacking.

  2. Kindergarten learning can well be life’s lesson…Use of analogy and parallels that you have drawn from seemingly two different worlds is simply mesmerizing! I wish this post is etched well in my brain so that, God forbid, if I am faced with a situation like this, I will be better prepared to handle it!
    Thanks for this piece of thought!
    Anagha From Team MocktailMommies
    Collage Of Life

    1. Thank you for your kind words! I must admit, I was rather stuck on the letter “K” until I spoke with a good friend of mine who also suffers from chronic health issues. While I wish I could take credit for the kindergarten theme, it was actually her idea for the word. I had originally planned to address these things under the letter “L for learning to live again”. However, I loved the concept of kindergarten and decided to run with it. I’m glad I did!

  3. Here from the A-Z. One of my parents was diagnosed with cancer in the 80’s so I have an insider perspective on the impact of a major illness on family life. Life before and life after diagnosis can be hugely different and difficult for everyone concerned. It involved a country move, long sessions of chemo, dealing with the side effects of the drugs. It also affected everything else, from choice of careers to dinner menus within the family unit.

    All the best,

    1. While sorry to hear of your parents’ fight with cancer, I sincerely appreciate your willingness to share some of your experiences here. I too have been touched multiple times by cancer in my family, and am well aware of the challenges it can pose for the family as well as the one battling the disease.

  4. Finding out that I have learning disabilities and may be borderline autistic as an adult was very challenging. The hardest part was the the people who were the closest to me were the ones who insisted on claiming that my disabilities were not real. Having a support group of people who understand is essential and it helps people with invisible disabilities understand that they are not alone. As long as you’re not alone, anything is possible.

    1. “As long as you’re not alone, anything is possible.” – Very insightful comment! I’m sorry to say that you are not alone in finding that those closest to you doubted the authenticity of your disability. I am glad that you were able to find support and prevail in spite of your challenges. Keep up the great work!

  5. Your use of Kindergarten was an excellent way of explaining the situation – everyone connected has to find a new way of learning to live with the diagnosis and certainly a new language. I would also like to see, as a teacher, that the patient/kindergartner is also allowed to ask questions and challenge ideas put forward on care/medical issues to advance both their own knowledge as well as the teacher’s – something that I think is often missing in medical care. A two-way dialogue is surely essential?
    I am so pleased to have found your blog via the A-Z Challenge and will be back to catch up on reading your other blog posts 🙂

    1. I absolutely love the fact that you included being “allowed to ask questions and challenge ideas”! I often speak about the importance of a partnership between patient and provider in order to attain a treatment plan that is beneficial and acceptable to all. To accomplish this goal patients must take a more active role in their healthcare and do the appropriate research to have an informed discussion with their caregivers. While not easy, I feel it provides for better interaction and therefore a higher level of care. I agree wholeheartedly that a two-way dialogue is an essential component of quality healthcare!

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