celebrate-life

Celebrate Life

Today I wanted to focus on celebrating the big things since we discussed celebrating the small stuff on Monday. So, why not go for the most significant thing worthy of our celebration, and that’s life itself? Why not celebrate life?

Living with a chronic illness makes celebrating life hard, but it can be done. We might wish things were different, hope that we were healthy. But let’s be honest: if we were healthy, there would be something else to make celebrating life difficult. It’s in our nature to skew towards the negative.

We all wish for what we don’t have, no matter how rich or healthy we might be. We are always desirous of something, and with that, we sometimes forget the most important thing out there: that we have our lives.

Using Mallory Smith as an example, let us celebrate each day despite the setbacks we encounter.

Appreciating Victories (Big and Small)

Each day we wake up is a small victory. If you wake up with no pain, a victory. If you wake up with no exacerbation, a victory. If everything is going well, then that’s a victory! That is a moment worthy of celebration.

Maybe you don’t take each (relatively) good moment for granted, but there might be moments where you forget. I often forget to appreciate the exacerbation-free days. I am reminded to recognize them when I am in the middle of a particularly frustrating exacerbation episode. At that point, it’s too late. I am in the past, appreciating what I had; or in the future when the event is over.

Neither of these options is ideal because I am struggling to maintain my mindfulness practice, which can help me manage my discomfort and stress.

It’s difficult to appreciate life with a chronic illness. The absolute uncertainty of when we’ll experience a flare-up is frustrating. Deep in the moments of an exacerbation brings us to the breaking point. Yet, we have to press on. The moments our illness minimally impacts us are worth appreciating.

Allow yourself to celebrate the mundane. Try not to feel weird about it because it’s something everyone, healthy or chronically ill, should do. Celebrate over social media if you need to, let others know what’s going on in your life but do not worry about getting validation. You probably won’t get it, or you’ll get a negative person trying to bring you down. Ignore them because it’s your celebration. Not theirs. If it’s important to you and you are the only one who matters.

Putting it into Perspective

A few months after my diagnosis, I was in the position of being “at least I’m not them,” for some stranger. It was not a good feeling to be the subject of someone else’s perspective-check. Yet, it’s a mindfulness exercise, recognizing that while your life might not be where you want it, there is always someone worse off than you.

To put it into context: I was in group therapy at the time, and it was my final session. As I was doing the “graduating out” exercises, the person taking my spot overlapped and was in their first session, seated beside me. I described my life with MS, how I was coming to terms with it, and I noticed this new person writing furiously in their journal.

I later learned that it was poor form for the facilitator to allow the journal into this safe space.

Curiosity overcame me, and since they were sitting next to me, I peeked over to see what was on the paper. I saw the words “…she has MS, at least that’s not me. I am lucky not to be her.” I was humiliated to see those words. No one else in the group had MS, so it was clearly about me. I could feel my anger towards this person rise and towards myself for being put into a position of pity.

Was that a breach of privacy to peek at what they wrote? Perhaps, but they didn’t exactly try to hide what they were writing. The journal was wide open and tilted towards me. Not knowing this person or their situation, it’s possible they wanted me to see what they wrote.

I recognize the importance this practice plays in our lives. It allows us to acknowledge that while our situation is not ideal, we could have it worse. Often it is said to us by others either as a means to comfort us or get us to be quiet about our situation.

So it’s a mixed bag as to whether this type of perspective check is healthy or not. I am not going to endorse it one way or the other beyond recognizing the importance of maintaining perspective.

For this person, perhaps I was able to provide small comfort in their life. It was incredibly humiliating and yet positively humbling. It would take a few more years before I had a better perspective, but I learned at that moment that I am not as perfect as I thought I was. It humanized me to myself. I know that sounds weird, but for years, I had an inflated sense of self as a coping mechanism. I was out of touch with reality, and this private journal entry broke through that.

It gave me perspective in a different way that it gave the writer perspective. I suspect, given what I remember of what little they shared about themselves, I probably gained more from the whole experience than them.

Mindful of the Moment

Practicing mindfulness is a chance for us to appreciate life.

When we celebrate the moment, at the moment, everything melts away. I am fortunate enough to spend a week or two on the shores of Lake Michigan every year. Looking out at the endless watery horizon, I can put everything aside and focus on that moment, staring off into the distance. It grants me an opportunity to put my life into perspective, but also recognize how fortunate I am.

We may not be able to spend a few moments in a place conducive to personal reflection, but we can spend time being mindful of our life. We can appreciate being able to breathe on our own; our ability to walk or if we can’t, the tools available to us so we can remain mobile; and we can appreciate the support network available to us, regardless of its size.

Take time to connect with the ground beneath your feet, the chair you sit in, or your bed. If you connect with the earth, reflect on all the other people who stood in that spot throughout time. Feel a connection to the faceless masses over several millennia. The animals, the plants, and all of life that experienced the same place you are in right now. Feeling that connection to others, allows you to feel a connection to life itself.

Celebrate that life.

It’s typically in these moments I feel small, but not in a negative way. I recognize my space and place in the universe. My existence is not even a blip in time or space. My problems, concerns, and worries will not matter in the end.

What is important is what I do with my blip in time.

Celebrate Life

Take some time to celebrate your life, as it is, no matter where you are in life. Put it into proper perspective, experience the benefits of mindfulness, and take time to decide how you want to spend your time. Do you want to engage in negativity beyond healthy expressions, or do you want to enjoy the time you do have, as imperfect as it may seem?

Choosing to celebrate life will help you feel better, lower stress, and find the personal satisfaction you might be searching for, despite your chronic illness.


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Featured photo credit: Canva

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Learning to Manage Expectations

Learn to manage your expectations.

It’s one of the first things your healthcare specialist says to you after receiving your diagnosis. While my neurologist never explicitly said it to me, it’s implied. Granted, they have high expectations for my wellness, often higher than I had for myself. But when I was in the hospital, pre-diagnosis, that was one of the first things the hospital neurologist said to me in response to my health concerns.

Whether it’s been said or not, it’s something we learn quickly with a chronic illness. We must manage our expectations because we have no choice.

For many of us, we have the following expectations in life: we’ll be healthy, achieve personally, and go far professionally. Often these expectations get scrapped in favor of coping with a chronic illness diagnosis. We might have pain to manage that prevents certain exercises. Our fatigue gets to be too much that we cannot do the same personal tasks we once did. Or our workplace can only accommodate our illness so much before we see colleagues surpassing us.

The expectations we once had slip away and we feel nothing but discouragement. But do we have to let those expectations go?

John Gary Bishop says in Unf*ck Yourself that we should “expect nothing, but accept everything.” It’s perhaps the healthier way to approach the “manage your expectations” conversation. We should scrap all the expectations we have for ourselves and accept whatever life sends our way with an open mind.

This refers to the positive and negative expectations we place upon ourselves.

Why We Set Expectations

Why do we even set expectations in the first place?

In childhood, expectations are placed upon us and for us. Parents might expect us to take on a level of responsibility around the house, or they might share their desire to see us succeed when we become adults. We extrapolate this external expectation and internalize it for what we think we’re capable of doing. Expectations drive our dreams and our desire for achievements.

But rarely are limits placed on these expectations, and as a child, why should it be limited? We imagine being firefighters, doctors, and presidents as our career goals, not wanting to pick between the three. We expected to achieve anything, especially when told we can be whatever we want when we grow up.

Illness or not, we learn quickly that there are limits to our expectations. Not all of us will get into an Ivy League school. We will have to choose between a firefighter, doctor, and president for a career, if only to pick one to focus on at a time.

Life will not work out the way we expected. And then we get our diagnosis.

The Problem with Expectations

The obvious problem with expectations, at least at first, is that we are often unprepared for the letdown. When we don’t achieve the way we expected, it can feel like a failure. For some, that can lead us to shutdown and get stuck.

When we set expectations early in life and achieve them, it’s often viewed as a good thing. Rightly so, you set a path for yourself and achieved your goal. Rich Karlgaard writes about the problematic relationship Western culture has with early bloomers in his book Late Bloomers. Western culture is so hyper-obsessed with the Mark Zuckerbergs, Elizabeth Holmes, and Malala Yousafzais, that it overlooks those who quietly grind away to achieve their success later in life (30s and beyond).

Because there’s an intense expectation for early success, often when we leave high school or college without making some “30 under 30” list, there’s a feeling of panic. This can bring our personal expectations down, or cause us to stall out for a few years.

This is one problem with societal expectations: we misplace expectations on people who may not be emotionally mature to handle the pressure (for reference: Elizabeth Holmes, Martin Shkreli). When young people are pushed to succeed early, they forget that a window does not close as soon as they turn twenty-five. That window for success stays open their entire lives.

If you are alive, you still have the chance to bloom and succeed.

The second problem referenced in Karlgaard’s book is that early bloomers do not know how to handle failure in the same way late bloomers do. When you are a late bloomer, you get used to “failure;” you get used viewing it not as a failure but as a learning experience. Late bloomers are better equipped with managing their expectations.

Learning to Manage Expectations

In life, there are two sets of expectations: “positive” and “negative” ones. This is a false binary, but I am going to use it for clarity sake. Positive expectations are the goals we set for ourselves that we want to achieve. Negative expectations are the times we don’t believe we can achieve it.

At the time we receive our diagnosis, we might drop our positive expectations: career, family, personal goals; and replace them with negative expectations: lack of mobility, exacerbations, and limitations.

For example: before my diagnosis, I intended to become a University professor. After my diagnosis, I dragged my feet because I assumed I wouldn’t be able to handle the rigorous testing due to memory issues. I replaced a positive expectation, “career goals,” with a negative one, “my memory prevents me from achieving.”

If you are like me, a late-bloomer, hopefully you know how to handle disappointment and also view perceived failures as learning experiences. Transfer that awareness to how you view your illness: manage your expectations away from the negative reasoning of “I can’t do this,” to positive “why not try it anyway?”

Often after a diagnosis, we work our way through grieving for our health. It’s a healthy and necessary process, but sometimes we decide to get stuck on the negative thinking. It’s easy to look at all we think we can’t do, rather than focus on what we can do.

But you might surprise yourself if you take a moment to release the expectations you place on yourself. Yes, you may be struggling to walk or get out of bed today because you physically cannot do so, but does that mean you should indulge in the negative expectations of what you can’t do?

No.

There was a time after my diagnosis where I didn’t think I could run or do anything active due to numbness and fatigue. I was in a negative expectation mindset. I actively decided to remove all expectations on myself and said, I can do something. It won’t look the same as a person without an autoimmune diagnosis, but it will be something.

The moment I removed all my expectations (negative and positive), I found I was able to achieve.

I actually found I went farther than before my diagnosis because I removed all expectations I placed upon myself and my abilities. Even when I was “healthy” I had numerous expectations that prevented me from achieving.

This is because when we manage our expectations by removing them, we remove the mental obstacles that prevent us from attempting in the first place. We go out and attempt to achieve without thinking about the limitations we might have. We may still stumble, but it isn’t a failure as much as it’s a learning experience.

If you were an early bloomer, this is your opportunity to bloom once again. Or, as it is in my case, my chance to bloom later in life.


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Frustrating Personality; Strong Emotions

I’ve often thought to myself, “Man, I have a frustrating personality.” My combative nature negatively impacted my personal relationships. For a long time, I wanted to change my personality, but I believed when I was told that personality is fixed. If I was a pushy person, then I would always be assertive and no deviating from that behavior.

I am discussing personality because it’s one of those things that I highlighted as a dislike in moments of self-reflection. I can imagine some introverts wish they were more outgoing while some extroverts wish they were more introverted.

Since becoming more self-reflective, I found my personality shifted without realizing it. It’s not a significant shift, but I am noticing that life is a little easier than it once was, despite the chronic illness. I would fight certain aspects of my personality, but now I accept them. I’ve found this openness levels me less stressed and more personally satisfied.

Personality: Inflexiable?

So is the personality inflexible? The answer is yes and no.

Often major life experiences can shift our personality one way or another, but there are core things about ourselves we cannot easily change. An introvert cannot become an extrovert overnight. They might be able to have more extroverted moments, but they may never reach the same levels of extroversion as someone else.

There are five traits to our personalities. These are the dimensions that help define and shape who we are:

  • Openness
  • Conscientiousness
  • Extraversion
  • Agreeableness
  • Neuroticism

Each of these aspects is flexible in of themselves, but the degree of flexibility will vary from person-to-person. As I go through each trait, you may notice that you were once curious about a new venture that you are now extremely cautious. This is where the personality shift comes in and why they can be more flexible than you expect.

As I go through each type, I place no value judgment on the examples I provide.

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I Want to Make Personal Changes

We all reach a moment where we say “I want to make personal changes.”

That moment comes when we are unhappy with our lives, or our relationships, or how we manage our chronic illness. When we say “enough,” we self-reflect. But when we self-reflect, we realize that there’s a lot of changes that need to happen to become our ideal self. And that’s where the desire for personal change can stop.

We should acknowledge that we don’t like making these changes, but that they still need to happen.

I Don’t Like This

Humans are complicated creatures, so there isn’t one source for what frustrates us. While I can point to specific influences in my life as the reason why I think a particular way, there is a lot more going on in the background. Many times, I am unaware of these background influences. I just know that I think I am inadequate.

Rationally, I know these thoughts are false. But these thoughts and actions have a hold of me and make it difficult to see past my flaws.

I am lucky that I can point to some situations in my past as the source of what I need to change. That isn’t always the case. There are reactions I have, and I don’t know where they come from. In these situations, it makes it more difficult to want to make the necessary changes.

Knowing the source of my anger makes it easier to acknowledge it and be mindful of it. I may not always successfully deal with it, or even attempt to deal with it, but I am more likely to try and do something when I am able to say “oh, that reaction stems from when the kids in the neighborhood wouldn’t play with me.”

In cases where I don’t know the source of my behaviors, I am more likely to be resistant to making positive changes. It’s stepping into an unknown, and I don’t like that. I don’t have control over what’s happening or what I am thinking. But I know I have to make a change because continuing behaviors that are unhealthy aren’t helping me manage my parenting or my MS.

Hopefully, this resonates with you. You may feel similar: I don’t know why I behave this way, and I don’t want to take steps to change because the idea is discouraging. Know that you are not alone, especially in your chronic illness, and you can make those changes because I know you can. You want to achieve your goals and the only way to do that is to make changes to the unknown and what you don’t like.

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I Hate Self-Improvement

We’re finally addressing what I’ve thought many times and I’m sure you’ve too: I hate self-improvement.

We can pack everything up. Everyone head home. The blog’s done. Everything’s been said that needs to be told and we can move on with our lives. It’s been really nice taking this near two-year journey with you.

Okay, we all know I am joking. I still have lots to write about, and I am not ready to finish. But let’s take a moment to acknowledge this truth: self-improvement stinks because it moves us into a space of feeling uncomfortable. As discussed in Monday’s post, Bishop writes about our tendency to be risk-averse when confronted with going outside our comfort zones.

Self-improvement only comes when we get outside our comfort zone and acknowledge that what we are doing is not working. When we stick to our ruts, we do not grow. When we stop growing, we are more susceptible to dissatisfaction.

Chronic illness does a lot to keep us in our place. We feel a lot of pain wrapped up in the diagnosis. Every day is a fight to manage our health, our time, and our lives. Asking ourselves to take that extra step to make simple improvements can feel unreasonable.

Settling into a mindset of hating self-improvement is easy. And that’s okay, you can hate it. You can hate it in the same way you hate exercising, but know you should take a few minutes a day; hate eating a particular way, but know it helps you feel better; and hate taking your disease-modifying drugs, but they keep you stable or alive. No one is saying that saying to make self-improvement changes with a smile on your face.

I refuse to believe people who make self-improvement/self-help their life don’t have moments where they hate what they are doing.

You may hate exercise, eating a certain way, or taking your medication, but you know you need to in order to feel and get better. The same with self-improvement. You can hate it, but it is good for you all the same. Remember this: making simple improvements can help you better manage your illness which is what I am encouraging you to do.

The Problem with Self-Improvement

Self-improvement takes us all down the same path. The scenery may look different, but the concept is always the same: figure out what we want to change, work to change it, deal with the challenges, then recognize there’s a roadblock we need to address before moving forward.

When confronted with that “roadblock” it can stop us in our tracks because it’s distracting, makes us feel bad, and seems insurmountable. It may even be something we’ve spent a lot of time avoiding. We don’t like it and want it to go away. But confronting this roadblock head-on will help get it to go away, or at the very least, get it to have less of a hold of us.

We must confront it to find success.

Let’s say you are trying to quit smoking. In the process of trying to stop you discover there is a pleasure you get because it reminds you of your grandmother who smoked. Smoking, on some deep level, is a connection to her. When you give up smoking, there’s a sense of that connection is lost. That might halt your desire to quit: you don’t want to lose your grandmother.

But the reality is this: you need to quit to improve your health, and smoking across the board exacerbates chronic illness symptoms. The same is for self-improvement: we need to make changes because what we are currently doing might exacerbate our symptoms.

I Hate Self-Improvement

2019’s been good so far, but I haven’t enjoyed all the aspects of self-improvement. I enjoy how my mood’s improved, the improvements I’ve seen, how I feel, but I wouldn’t say I’ve enjoyed the self-improvement. But it’s been tough to get to this place.

I dislike self-improvement. It’s an exercise like my running and it’s not easy. I was saying to Ash the other day how I want a mental and emotional break. But if I stop doing my mental/emotional exercises, if I “take a break,” I will revert back to my old way of doing things. A “break” would be tantamount to a backslide and I don’t want to do that.

For the record, self-care and a break would be two different things in this situation. What I need at this moment are self-care and self-compassion. A break would be halting self-improvement because it’s gotten tough.

If I want to be a less judgmental person, I have to push through those moments where I want a break, I want to give up. If I want to eat healthier, I have to resist carb-overload temptations. I have to fight my natural tendency to want to give up when the going gets tough.

Working through the Dislikes

When we spend time self-reflecting, we see things that we want to change. If you subscribe to my newsletter, you know that last month I asked readers to come up with five things they love/like about themselves and five things they dislike/want to change.

Take a few minutes to list out five things you dislike (do not use the word hate) about yourself. It can be anything and should be the first five things you think about. If you overthink about it, you dismiss your unconscious voice, and that’s who you are trying to listen to in this exercise.

Once you’ve developed this list, keep it somewhere safe so you can pull it out throughout the month. We will hopefully find a way to address your dislikes in a healthy way. But this month will be about working through your dislikes.

Beauty in Imperfection

As stated at the beginning of March, there is a beauty that grows from the mud. We want to look at those dislikes, perceived imperfections, and parts of us we want to change and honor them. Sure, we will work to change them, but it’s these imperfections that make us beautiful and unique. Even our chronic illness.

A preview for what’s to come: if you are a subscriber to the weekly newsletter we’ll be addressing our inner toddlers. Because though we may not want to admit it, that toddler is still inside all of us.

May is going to be a difficult month. I will be addressing a lot of the dislikes I have for myself, my perceived “flaws,” and any doubts I have about myself. But like everything, I will get through it. We will all get through it and see the beauty in our imperfections.


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