Disease Does Not Define You
This lesson was one of the hardest for me to learn and I actually did not even know I had to learn it. Literally for years I always referred to Multiple Sclerosis (MS) as "My MS." I hear so many who still do this and it reminds me how far I have come.
Using the words 'my MS' creates a level of ownership through language that does not create the space for miracle status. In fact it does just the opposite and sets you up for failure. I know it did me and by the age of 37 I was declared legally disabled and unable to earn sustainable income.
Learning how words and thoughts defined my life with MS was a huge lesson I learned in my late 40"s and it has produced great outcomes. Thinking about language in this way created for me the first ever truly objective space for healing by removing the word "my" from MS. Finally I was able to see MS separate from myself.
When someone is talking about issues of addiction to say "I am an addict" brings with it huge societal and cultural norms that are not always easy to own. The simply phrase "I am an addict" brings all kinds of negative thoughts just by using language in this way. Now if you would please Imagine for a minute saying "I struggle with addiction" instead there are almost no negatives and it is also outside of your person.
See how the simple change of language offers less 'baggage' and now can be viewed objectively and outside of one self?
It is not 'my MS' instead I struggle with MS. MS is one part of my person and it is not who I am. These are just a few of the lessons recognizing the role language plays have brought to my life. Literally set the beginning stages of MS no longer defining me.
For years no matter what it was some how MS took front seat to every event or occasion. When I was invited anywhere my first thought would be how is MS going to handle this. So strong were these thoughts that I failed to remember the reason there was an event. My life was MS absorbed, paranoid, fearful and getting smaller by the minute.
Being invited to a wedding, graduation or even a birthday party always came with way too many thoughts about how MS was going to handle this. So many that it often made going out and engaging in life pretty impossible. This extreme response was felt by friends and family and began to limit the number of invites we were receiving. Little by little MS was taking control of everything by defining who I was.
An invitation would start the checklist of anxiety with thoughts like:
- Will there be stairs?
- Do they have air conditioning?
- How far is the bathroom from the main room?
- Will they have a buffet or sit down meal?
- Do I need to hold a plate?
- Will it be outside?
- How will I wall walk if it is outside?
- Will they have a tent for shade?
- Will there be chairs for me to sit or will we be standing?
- Is parking close?
- Is the driveway flat or slanted?
I would be so wrapped up in thinking of all the hurdles MS offered that I could not see things like:
- I didn't get out much how grateful I was for events where I can see many at one time.
- The reason for the gathering and/or celebration.
- Gratitude to be included as many invitations stop coming when you live with chronic disease.
- The joy you get from having a night with friends and family.
- That life was meant for living and my disease was making my world a life of fear driven realities
I am not saying that ignoring things that support your well being when an invitation comes is the alternative. I am saying that disease is only one part of our life equation and for many of us it can grow to be the only a part which is never a good look.
When i had full time help my assistants mother had MS and it had her almost blind and 100% dependent and bedridden. Sitting in a wheel chair was even hard for her. She was awake and aware with trouble speaking most days.. This however did not stop her from going out to dinner with family and friends to their favorite Mexican place in Venice Beach. Quite often you could find her attending weddings and events. She even came to a fund raiser I did supporting MS.
Clearly MS was the 1st thing you knew about her simply because of how she looked & her wheelchair, but once you met her somehow MS was invisible. Her zest for life in spite of MS was contagious and did not defined her.
How is this possible?
Stop focusing on what you can't do and always start with what you can do.
I could not be in heat or cold for many years. It would bring on crippling outcomes and for years I would worry about temperature issues. This limited my ability to say yes to invitations because I was afraid to risk it. Sadly there are ways to deal with this and somehow I could not see them.
- I could attend events at optimal times for temperature management.
- I could wear a cooling vest or neck wrap.
- I could dress in a way to support my body temperature issues rather than for the occasion.
- I could go to my car and heat up or cool down if I needed.
- I could rest up all week for the chance to engage with community.
I know that I have control over how my body responded to MS based on my choices. These choices were not limited to how I moved, ate or slept although a huge part of the equation. Instead they where choices made in how I thought about those things and most things in my life. When all of my acts were focused on MS I stopped living and being V. Once I began focusing on loving myself and honoring a life with MS I was able to have living define who I was and not MS. BAM.
- I don't do yoga because I have MS. I do yoga because my body loves it.
- I don't eat healthy because I have MS. I eat healthy to fuel my body for another day.
- I don't not hula hoop because I have MS and need cardio. I hula hoop because it is fun and helps on long drive days.
Language creates the lens.
Listen to how you speak to yourself and the steps you take to deal with chronic disease. If a step is identified because you have 'blank' begin to think about ways you can change the phrase to create a space for living.
Disease does not define you unless you chose this for yourself.
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