Change Of Life

One of the things I could never have imagined as being a product of health challenges and disabilities is the way in which I handle day to day inconveniences and dramas. I have so much more resilience and ability to prioritize issues that it amazes even me.

Years ago I would worry about what people thought about me or what they said to me. Petty things that people said to me would see me investing far too much time and emotions. I worked hard to please people and I was often in the most destructive relationship, but not anymore.

Today the things that people, even people I consider friends or closer, might say or do to cause annoyance or drama simply doesn’t make it through my emotional filter anymore. At most it might give me cause to shake my head at the trivial nature of those actions but then I quickly refocus.

How is it possible?

Over the past years it has become profoundly clear to me that many of the actions and emotions out there are just not worthy of my time or investment. It only serves to sadden or irritate and generally has no real purpose or long term value. I now value more meaningful and useful exchanges so I set a high filter for most of the minutia out there.

I no longer need a large group of social interactions or the approval of many people so I can take much more from life on my own terms. I could never have guessed that illness would offer me this type of remittance as it is not something you could imagine from such difficult circumstances.

When you are placed in these unique circumstances and under such extreme difficulties you can never see everyday things and experience as you once did and the way that many others still see them.

For example many people my age are still trying very hard to appear in control, appear well off, appear smarter, appear more successful and appear better looking than their friends, relatives and peers. They can still be invested in appearing this way, and in competition with others around them, regardless of their age and circumstances. These things no longer have such meaning once you have faced with real life challenges.

Illness redefines how you see yourself and how you see everything around you forever.

Although I would never have wanted to obtain these attitudes, skills and knowledge through these painful and awful diseases but I am amazed by how much I have learned and gained.

Comments on social media, passing remarks from strangers, social interactions and phone conversations are no longer processed the same way anymore, and they never will be. I don’t see the daily problems and issues the same as most people anymore because I compare them to a completely different set of criteria than most people do. I view everything through an entirely different filter now and I can never go back.

What people think of me and how they value me has become meaningless compared to how I will battle on through each day and how I will manage some of the hardest challenges most people will ever face, daily.

I also see and feel injustices and hardships in much deeper ways than I once did. I empathize with other people’s real pain and loss profoundly and have enormous respect for those facing such challenges, even if I am not close to them personally. I have also put real effort and action into the things I believe in rather than simply offer lip service or try to look concerned.

Sadly, it can easily draw upon too much of my limited resources when I put myself to helping and aiding people, and causes, that I feel deeply for. Because of the price I will pay I am forced to choose carefully what things I commit to and who I put myself to pain for. However I don’t believe I could be my true self without trying to give my best, and all that I can, to those things I deeply care about.

It will always be overlooked the real toll and sacrifice that the disabled and health challenged endure when giving their resources and emotions to people and causes, therefore we have to form a thick skin to people’s comments, expectations and actions. Although this is never fully understood by the outside world. For example people will happily say my kids come first with fear of backlash but the disabled or the health challenged are never given the same respect for choosing to care for their disability or their precious peace.

I look back at all the things I have undertaken and tried to do for others since I have been so ill and I remember clearly the price I have paid. Whether it was fatigue, pain, loss of vision and balance, muscle strain, spasticity or any number of other physical challenges, they are all the real costs to the quality of my life (and my partners) even if it is never known to anyone else. I have had to endure the ignorance and cruelty of some who never appreciated the sacrifices but I have used those times as a lesson in my future endeavors.

I never give of myself for any other reason other than to help in some way so I have never told anyone of the pain I may have endured, in this way I know I am always doing things for the right reasons. It is also how I retain my right to say no when I must. There will always be more things that I wish I could do to help than I will ever be able to do.

The changes in life experienced by me (and many like me) are far more profound than most people will ever have to face or can ever truly comprehend but I am grateful for the ability to see through life and through much of the noise and unimportant everyday comments (and actions). Truthfully I would never want to lose this precious and life changing knowledge even though it has come at such a terrible cost.

Even today I could quickly reflect on dozens of comments, actions, thoughtless words or annoying behaviors that I have encountered and yet I can quickly sift through them all to recognize what is truly important and what will add to my life and what is completely and ultimately meaningless.

One of the biggest misconceptions that I have discovered since entering this world of autoimmune diseases and disabilities is that most able bodied people will often ostracize sufferers fearing that they will ask too much or be needy of help and assistance from able bodied and healthier people when the reality is the complete opposite. I have worked hard over the past decade to never impose or ask anything of anyone and to always do for myself!

Many sufferers are proud and amazing people who have clawed our way through the most painful and soul destroying times of life and had to do so much on our own and for ourselves. It becomes a way of life and few people really know the battles, pains, anguish and fears that we have come to face to face with … and it is truly life changing!

It is for this reason we don’t see the world, the petty words, the competitive behaviors and the cruel and thoughtless actions of others in the same way we once did because we are always facing far more important challenges every moment of the day.

Gentle hugs,


One thought on “Change Of Life

  1. I was ostracized today by a woman who saw me park in a handicapped spot. We went to same meeting. She ratted me out parking in a handicapped space. Of course i have a handicapped plate and wen the establishment asked me I told them it was OK i had a handicapped plate. She of course did not see the plate. She looked for a tag on my mirror an in my state either is fine.

    The person at the meeting asked if I wanted her to communicate her mistake to her. No of course not I said. But knowing she was obviously upset that 1. I parked int he space, and 2. Obviously refused to the car, she got more upset as things went along.

    Imagine her shock when I walked out and refused to waved good bye to her. See, I love causing her blood to boil. Boy did she get heated up. LOL good for her. She needed a little pick me up. 🙂


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