What’s Normal Now?

By Pat Akerberg, Guest Columnist

Trying to define what’s normal under any set of circumstances is tricky at best.  But whenever your personal version of normal has been hurled about and ripped apart by a medical tsunami, any sense of normalcy shatters.

Whether newly diagnosed or living with a progressive disorder, once our previous sense of normal falls apart, every unusual medical issue, complication or symptom that happens now begs the question: “Is this normal?”

That began in 2009 for me when trigeminal neuralgia (TN) hit. Then after a brain surgery to supposedly fix it failed miserably, my fragile normal collapsed like a house of cards. The disabling complications and surgical damage done forced me into premature retirement.

As my circumstances rapidly devolved, people tried to comfort me by defining the extreme changes in my world as my “new normal.” That likely comforted them more than it did me.

I’ve always bristled at the term “new normal” since TN struck. Why? Because “new” implies positive connotations of something fresh, without defects or problems. And the word “normal” suggests a typical or ordinary state that you can fit into.

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Sounds nice. However, trying to characterize a rare, debilitating medical disorder or painful condition as orderly is like trying shove a distorted square peg into a round hole. Plus, a progressive neurological disorder like TN doesn’t offer some future state free from a flawed quality of life. When the nerve damage invariably progresses, complications follow. 

Medical Reality

That’s why I prefer to term my changing circumstances as my “medical reality” instead.  That descriptor fits my state of affairs better. 

When my medical reality changed dramatically, I initially started questioning whether the limitations I was experiencing might fit some other version of normal out there.

Examples of my questions follow. No doubt you have your own. I wondered if it was normal to:

  • Cancel plans and miss important occasions because my pain is so unpredictable

  • Family and friends to focus on how I look (“You don’t look sick”) versus the invisible suffering I endure

  • Watch some of them drift away when I wasn’t getting better

  • Find myself having to explain or defend my medical reality more than I’d like

  • Have occasional “brain fog” that causes me to question myself

  • Become exhausted dealing with constant pain and lack of sleep

  • Need more help with some things when I never did before

  • Have priorities, interests, motivations or some facets of my personality change

  • Question how relevant I am or indulge in pity parties on bad days

I can attest that these questions can dig deep at the identity level. From my experience, the best answers to them don’t just pop up readily either. Instead you have to live into them – so they are believable… so they are yours. Making them yours is the point.

It helps if you are able to connect with others who share your medical reality. Then you can share, compare notes and support each other.

Hard Won Answers

At times even your own medical professionals may not be able to answer what might constitute normal in your case. Though they may have familiarity with your diagnosis, how it plays out may vary widely from person to person.

Working with a qualified counselor or therapist can also go a long way towards discovering what is true for you.  It helped reinforce that I’m the one who has my best answers.

These are two of my hard-won answers that work for me when I get frustrated by limitations:

  1. It is what it is… for now.

  2. When I can, I do. When I can’t, I don’t.

After a period of wrestling with a former healthy version of normal and a medically altered one, a personal clarity emerges – normal has become medically relative. 

What’s normal for your unique medical circumstances isn’t relative to anyone who doesn’t share that same medical reality.  And vice versa.

Eventually I concluded that it wasn’t helpful to question my altered state or try to measure up to an old paradigm of normal. That shift in mindset translated to permission to pursue a host of ways for me to compensate, accommodate and re-frame my daily living to better fit my medical reality.

The strategies that took shape from that shift are geared towards improved functioning and minimizing stress.  They lead to more realistic plans or expectations and pinpoint the kinds of help you may need.

Self Preservation Skills

As you work your way through normalcy questions into ways to redefine them, my experience has been that a more formidable self takes shape – one better skilled at self-preservation. Progress to that end doesn’t necessarily follow a linear or predictable fashion. 

The good news is that you learn to shift focus toward what’s within your control – and away from what isn’t. From this more fitting “work-arounds” emerge.

These proactive countermeasures act like seeds that create fertile ground for hope to take root.  While hope may not be a strategy on its own, it often provides the intangible fuel to press on.

One thing is certain – judging yourself as coming up short compared to some phantom reality definition of normal adds no positive value to your life.  

So, rather than submitting to bogus notions that medical deficits can reduce the measure of your humanity, give yourself kudos instead as your spirit and determination prevail over them. 

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Pat Akerberg suffers from trigeminal neuralgia, a rare facial pain disorder. Pat is a member of the TNA Facial Pain Association and serves as a moderator for their online support forum. She is also a supporter of the Trigeminal Neuralgia Research Foundation.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

The Surprise Gift Chronic Pain Gave to Me

By Jean Price, Guest Columnist

When illness or injury causes long term consequences and persistent pain, we often grieve for what we used to be and do before the pain. That's natural, because we've lost that particular "design" of ourselves that we knew and liked, even though we usually took it for granted.

Chronic pain sufferers don’t take anything for granted anymore, not with pain invading and diminishing our functioning, ability to work, care for ourselves, and be an active part of our families and friendships.  We want what we most likely won't have again. 

In life, natural aging is a lot like this too, only there is more time to adjust and it feels more like a natural process, not like something that has been ripped out of our hands.

At first, we spend a lot of time waiting to get well and wanting to be healed. To get better, get back on our feet, and rise above where we are. To be whole again. 

In the past, we usually recovered from ailments and injuries. But not when we cross that bridge into daily and life-limiting pain. In a sense, we aren't really "sick." We've just reached a new normal. There's no cure or any way to change us back.

I remember a long ago evening when my daughter was too slow to get up and help me set the table and get dinner ready. So I told her rather abruptly I didn't feel like doing it and really needed her help. She replied that she had a headache and didn't feel like it either, adding something that stopped me in my tracks.

"Mom, I'm sick tonight and you're not!" she said.

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JEAN PRICE

It wasn't until later that night that I realized what she had meant with those few words. I had been to the doctor the day before and had a bruise the size of a dinner plate on my hip from an injection. I was starting into the second year of severe pain after a failed back surgery.  A surgery with devastating complications that resulted in a second surgery two weeks later; ending with multiple doctors’ appointments and a dozen courses of steroid treatments over the next year. It made me even sicker and still unable to lift my leg.

I really felt sick, yet this had gone on so long that my daughter didn’t see me as sick anymore. I was just being me, and my pain and disability was normal. For her, the old mom was already history.  For me, I truly expected that if I just worked harder, found the right doctor, and suffered through the right treatment, I'd get back to my old idea of normal.

And of course I haven't. Instead, I've been through many new normals, all of them feeling like a downward spiral.

Until I found there is actually a big upside to all of this:  I have become a better person.

It's taken a lot of work. Grief is a verb and requires work! And it has taken good support from others and much learning. Yet the current "new me" has some really special attributes.  She is more patient, more compassionate, more at peace with change, more generous to herself and others, has a much stronger and tested faith, and has more joy in the little things of life.

She is less angry, less judgmental, less serious, less hyper-responsible, more loving, less co-dependent, more forgiving, more trusting of herself, more self-affirming, gives better support to others, and basically is way more whole. Less functional, certainly, but more whole.

Odd, but it's true. When our bodies fail us, we can choose to keep growing our minds and spirits, and we can find important things in life that are still easy, even when we can't do much. We find that love and joy come in little, surprising packages just waiting to be seen. And we find that there is more to life than what we do. We aren't human doings, but rather human beings.

Even with pain, we can chose to be kind, loving, at peace, and better than we were. We are not our pain. We are worthy and wonderful creations, and still enhance this world.

Yes, I do miss what I used to be able to do, but I really don't miss the person I was. Not at all! Because I like the person I am now so much better. Probably because I have been tempered by all that I’ve been through, and enriched by all the people and blessings in my life.

Life is full of changes and each change brings loss; even the chosen changes or the more positive changes still have losses. Yet we don't have to lose ourselves in the process of pain.  We can become more and better.

It's a choice. One of the few things we do have control of. How we feel emotionally, how we react, and how we think of ourselves and the world.

Pain doesn't stop us from being ourselves, only we can do that to ourselves. And if we do, then we've really lost, because the special person we each are deserves to be part of this world, and can still contribute and find joy, despite pain.  

I think I'm living, breathing proof of this.  And I'm glad I don't really have the choice of giving up pain or giving up who I have become. Because as odd as it may sound, that would be a really tough choice.  

Jean Price and her family live in North Carolina. Her chronic back pain began with a herniated disk and escalated after major complications from surgery. Jean also suffers from rheumatoid arthritis and osteoarthritis, and is a breast cancer survivor.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

5 Lessons About Finding a ‘New Normal’

By Pat Akerberg, Columnist

Once chronic pain and/or illness invade your life, any sense of normal that you once knew is shattered.

“Normal” implies that there’s some accepted standard or pattern that equals a widely adopted way of living or being.  It’s a consensus reality considered culturally acceptable or reliable.

Good health is one often taken-for-granted aspect of normal.  But what if your medical circumstances become anything but normal overnight? When that happened to me, I resembled a nomad who lost her way. I set out on a search for my next acceptable, reliable state.      

Feeling suddenly disenfranchised, without hope and alone, I longed for where I might fit again.  No wonder it was an appealing elixir to read books and articles that suggested a “new normal,” a reliable replacement for my previous one, could be found.   

How many of us have spent untold energy (that we pay for later) trying to find, construct, and mimic something resembling another version of normal when our lives fell apart?

It took me years, a lot of effort, and self doubt before I finally realized that the concept of “new normal” didn’t apply for me. 

After losing my health, a hazy cloud of guilt and embarrassment lingered over my perceived failure to meet others and my own expectations of normal. I was already questioning how a neurological disorder (trigeminal neuralgia) could run a swath of career and personal destruction through the middle of my life in record time.    

Family and friends kept slowly nudging me to get to a more predictable state.  Because I looked okay, they couldn’t appreciate my inability to keep plans on any given day.  Or understand why a multitude of doctor appointments, medications, or brain surgery didn’t make me “get better.”

Unless you live with a chronic illness or debilitating pain, it’s hard to fathom that they trump plans at will. 

Why couldn’t I find the place that the books/articles talked about?

Because pain has a life of its own that dictates yours despite your good intentions.

I finally let go of the unrealistic expectations swirling around me, realizing that constant change laughs in the face of pat answers that pose to corral it!

The kind of life altering changes that happened when I became medically compromised explain why chasing a “new normal” isn’t the journey its’ cracked up to be.

We know that change is a process that involves opportunity and stress (crisis) – even if the change involved is chosen, like changing jobs, buying a new house, changing a hairstyle, or dieting.  These kinds of changes are happening in your life and don’t really alter your life as a whole.  They are small, easy to digest changes.

Then there are the kinds of unfortunate changes that can happen to your life that carry more gravity.  They alter your life altogether.  Some can be temporary, like a divorce or job loss. Others, like losing a loved one, physical impairments, disabilities, or scary medical diagnoses that involve painful, progressive, or rare disorders transform your life overnight.

The very option of fitting into “normality” or consensus reality is taken away when those happen, despite our best efforts.  That’s a bell that rang true for me.

Sometimes ideas about finding a reliable substitute for normal can be motivational, if they’re realistic. But there are other times when expectations can set us out on a journey that disappoints if we’re not careful.  Elusive expectations can carry the potential to set you up for an emotional roller coaster ride.

Just because someone wrote about a concept doesn’t make it applicable or possible for all.  In some cases, expecting to find some steady state that’s reliable or trustworthy enough to call your “new normal” isn’t realistic.

If your condition is anything like mine, one that is progressive and creates other complications, continuous functional losses, or involves treatments that carry further risk, chasing some steady state becomes counterproductive.

What’s realistic instead is recognizing the state of constant change before you.  It’s an overwhelming kind of chaos. That means what’s predictable for me now is that my pain decides everything, not me.

I came to realize that the best way forward for me was to stop expecting myself to find and conform to the self help version of a “new normal” as the answer to feeling displaced. 

Here are five lessons I’ve learned about chasing normal and acceptance:

1)  When your circumstances are ever changing, your responses will too.  It’s all situational.

2)  Changes that happen to our lives present much tougher challenges, such as coming to grips with irreplaceable   losses. 

3)  Letting go of unrealistic expectations can be freeing when the circumstances impacting your health are constantly progressing or shifting.

4)  A "new normal" needs to to match the realities of living with chronic pain/illness.  Change is the constant, predictable steady state.

5) Chasing normal means going beyond the touted answers that we strive to pursue (equanimity, acceptance, letting go, etc.) and redefining them to fit our fluid situations. 

That’s a realistic journey that can deliver.

I know now that expecting my condition to fit into a predictable state won’t help me. Try as I might, chasing some concept of normal everyday while trying to fit in is truly out of my control, just like the weather.

Yet knowing that the weather always changes is something that can be counted on. And that’s a tried and true pattern that I can fit into.   That’s acceptance.

Pat Akerberg suffers from trigeminal neuralgia. Pat is a member of the TNA Facial Pain Association and serves as a moderator for their online support forum. She is also a supporter of the Trigeminal Neuralgia Research Foundation.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.