Reflecting 12 Years Post Accident (2020)

I wrote this post last fall (October 2020), as the anniversary of the car accident approached. 

Over the years, the meaning and emotion of the event have ebbed and flowed in a way that perfectly illustrates the grief process. I've written about this multiple times before: 

• The Battle Begins
• 3-Year Anniversary of Car Accident
• 4-Year Anniversary of Car Accident

When I moved to Arizona in 2017, I started seeing a headache specialist here. It so happened that the date of that initial appointment was the same as the accident. I consciously chose to take back that date; the move and new provider representing a clean slate of sorts. 

This year has been filled with so much loss, on both the individual and collective levels. Perhaps it's in light of this that I find myself more aware, as the anniversary of the accident approaches.

As 12 years post accident approaches, I find myself reflective. 

Photo by Faramarz Hashemi on Unsplash

Following my accident, I fought hard to get back the pre-accident Jamie. I finally reached a level of acceptance in living with this disease, and fought hard for the Jamie I am today. I'm still a work in progress, no doubt. But, in this moment, I recognize that I've come a long way.

I have to be very mindful about how I think about this. It can be all too easy to spin down a path of what ifs. The truth is, the person I was when the accident happened is frozen in time. She very well might've had a different journey, but the person I missed for so long (and sometimes still do) would be whoever she grew to be over the years. And, that, is unknowable. It will forever be an unknown. So, I must remind my mind that the grass may not have been greener. 

I'm grateful to have some people close to me that know me and love me as I am, not who they wish I was. I want to see me through their eyes, to believe in myself the way they believe in me...  with less self-critical judgment. I'm working on it.

Today, I recognize that living with chronic pain is hard, that each year that passes may affect me differently, that grief is a process with ebbs and flows... and... that I can do more than I think I can, that I can engage with myself with compassion and love, that I can give myself space to experience the grief process in all the ways it shows up. 

(As I'm posting this a year after writing it, I'll share about this year's anniversary in a separate post) 

"Loving ourselves through the process of owning our story is the bravest thing we'll ever do." - Brene Brown

Upcoming Happenings

I wrote in Farewell, 2018! about having a word or phrase to guide and grow in during different times.

Along those lines, there are some exciting events coming up over the next few months. Here's a sneak peek, but I'll definitely share more.

Headache on the Hill (February 12)

Photo by Nerdy Rockson on Unsplash

Headache on the Hill is an annual lobbying event in Washington, DC, where healthcare professionals, advocates, and patients come together to request that lawmakers recognize the impact of headache disorders and take action to increase research funding and awareness.

Miles for Migraine Walk / Run (March 2)

Miles for Migraine is focused on improving the lives of those living with headache disorders, by increasing public awareness, fighting stigma, and raising funds for migraine research. 

Migraine World Summit (March 20-28)

Migraine World Summit is a virtual event that will provide talks from "over 30 of the world’s top migraine and headache experts, doctors, specialists, researchers, scientists, geneticists, psychologists, authors, and advocates." The event is FREE (4-5 talks will be released per day, and will be available for free for 24 hours). If you can't listen during those dates, the Summit will be available for purchase. Click here, to claim your ticket for the 2019 Migraine World Summit.

RetreatMigraine (April 12-14)

RetreatMigraine is a conference focused on people living with migraine disease. It will provide "support, community, disease and treatment education, advocacy training, and complementary therapy experiences."

Headache on the Hill

Miles for Migraine

Migraine World Summit

RetreatMigraine

   

Evolution: How Being a Patient Has Changed Me

Today's topic is "Evolution. Write about how being a patient or caregiver has changed you. How have your goals changed? Have your values changed?"

There are so many things that come to mind for this topic. I have changed a lot, since I started living with chronic debilitating pain 5-years ago. I've written quite a lot on the topic of change... here's one that jumps out in my mind:  Change: Life Since the Accident (Jan 6).

Slowing down
I've learned (and am still learning) to slow down. It hasn't been easy, as I was always on the go, before my accident. I planned nearly every hour of my day... man, was I a planner! But, that doesn't work for me now. I have to be mindful of my body's limitations in a way that I never did before. Otherwise, my body may just shut down and/or I later pay a very high price. So, I find my life is a much slower pace than most others, but that's what I need.

Living in the present
I'm learning more and more to simply live in the present moment. It's harder for me to do at some times than others, but I'm much better at doing it than I used to... I still have a way to go, though. When I'm having good moments, I do my best to cherish and enjoy them, regardless of how long they last. When I'm having very painful moments, I do my best to tend to my body and turn my focus on God - thanking Him for what I have, asking for His peace through the storm, praying for others who are experiencing any pain, etc.

Depending on others
I grew up to be an independent woman, and I've always taken pride in that. So, being thrust into a position of truly needing to depend on others was a huge (undesired) lesson in humility, among other things. I still have difficulty with asking for help, but I'm slowly becoming more comfortable with asking for and accepting assistance from others. I think it's an important lesson for everyone - not to depend on others for everything, but to be able to ask for and accept help when needed.
* There's a blog post that I started almost 2.5 years ago regarding independence / dependence... I think I'll work on finishing and posting that in the next few days. 

Gratitude
I find myself filled with gratitude in a different way than I was before. My list of things I'm grateful for includes even the simplest of things that I used to just take for granted. And, as humbling as that can sometimes be, it keeps me focused on the things, big and small, that God has blessed me with.

I have changed
I've become more focused on my priorities, stronger in my faith, more outspoken in health matters (especially concerning justice for those with disabilities), more understanding of others, and more forgiving of myself and others.

Goals have changed
My goals have changed. Sometimes I feel like a failure because I don't have my 5- or 10- (and so on) year plan on the tip of my tongue. My goals aren't SMART (specific, measurable, attainable, relevant, time-bound), like I was trained to believe is necessary. Perhaps it is necessary, but I don't feel a specific drive or calling of something to do in my life right now. And, while that sometimes makes me extremely anxious and like something must be wrong with me, I'm doing my best to trust that God has a plan for me.

Overall, even though I don't have SMART goals, I do feel more focused on a clear life purpose: to faithfully follow God, allowing Him to work in and through me wherever I am and however He desires. Now, that's not to say that I don't struggle along the way. I don't have any clue what I'm supposed to be doing with my life, but I'm doing my best to root myself in the One who does know.

This post was written as part of the National Health Blog Posting Month (NHBPM). Other bloggers will share their posts on this FB page.

Lessons: Finding Joy

I've come so far in being able to feel true happiness for others and the things that are happening in their lives, but sometimes I find it so very difficult. It makes me feel guilty, and I hate being unable to share in their joy.

Since my accident, I've struggled with feeling like everyone else is moving forward, while I just seem to stay in place... stagnant. Sometimes, everything seems to be happening around me, while I remain on the sidelines. A good friend of mine described it as being on a treadmill - constantly walking, but never really getting anywhere.

I love that people are doing well. I think the world would be a horribly miserable place, if everyone was living in chronic pain. I also love being able to share in other people's lives, and I want people to be able to tell me anything, not having to "walk on eggshells" with me. But, it's sometimes heart-wrenching. When people talk to me about their hopes, dreams, goals, and achievements, it can be hard for me... especially if these things are similar to what my own hopes, dreams, and goals have been / are.

"Consider it pure joy, my brothers and sisters,
whenever you face trials of many kinds,
because you know that the testing of your faith
produces perseverance.
Let perseverance finish its work so that you may be
mature and complete, not lacking anything" (James 1:2-4)

I struggle with jealousy of people's lives because of what they're able to do that I can't. There are some things that I simply can no longer do. I'm coming to peace with some of the limitations that I have (not in a roll-over-and-let-the-illness-win way, but just accepting that there are limitations and trying to live the best life I can despite them). But, I haven't formed any hopes and dreams for my future with this disease. I don't know what's in my future, much less how to get there. So, seeing others move into areas that I have a passion for (and used to be very prepared to do) can be hard to swallow sometimes.

The struggle, guilt, and jealousy may not always be so strong as to bring me sadness; but I think they're always there, lurking in the background. I don't want to feel these things, especially not so strongly. I truly am grateful for all that I have. But, sometimes I just want to scream "WHY?!" Why does it seem that no matter what I do, there's no reprieve? I just feel so weary and worn down from the constant battle.

Migraine Awareness Month Blogging Challenge #22 (Part 1): The Game Changer

There are many examples of times that my plans have changed due to an unexpected Migraine!!!

I've missed friends' weddings, family get-togethers, church services (I'm ashamed to say that I've only been a couple times this year), and various other events (big and small). I often have to change / adjust plans, even to do "normal" activities like going to the grocery store.

Jeremy and I have had to get used to the "winging it" that comes along with a chronic illness. I never know how I'm going to feel or how long I'm going to last. We both hate having to change / cancel plans with others, and / or make sure that other people understand that our plans could change at the last minute (they're pretty volatile). I think it's a guilty sort of feeling, though we may not label it or think of it as such. Even though we're getting used to this, we really hate when it starts affecting other people.

Whenever I have an unexpected Migraine-free experience (i.e., having a manageable headache), I try to take advantage of it, without overdoing it. I want to get all of the things done that I haven't been able to do because of bad Migraines. It takes a lot of reminders from myself and my husband to not overdo it, and to remember to take frequent breaks and pace myself. But, I try to cherish every moment of these scarce low-pain days!

"Life is about not knowing, having to change,
taking the moment and making the best of it,
without knowing what's going to happen next."
- Gilda Radner

This post was written as part of the Migraine Awareness Month Blogging Challenge (MAMBC), which is initiated by www.FightingHeadacheDisorders.com and the National Migraine Awareness Month is initiated by the National Headache Foundation (NHF).

Lessons: Learning From Life With Chronic Pain

There are many lessons that can be learned, while trying to adjust and learn to live with chronic pain / illness. It can be difficult to remember to focus on the lessons and opportunities that can be found in the difficult and dark times of illness, but it's healthy to recognize that we're still growing... perhaps just differently than we previously anticipated - there are lessons I've learned over the past 3.5 years (since my accident) that I may not have had the chance to learn, otherwise (however, I wish they didn't have to be such painful lessons... oh well, such is life). Here are some of the lessons I've learned / am learning:

Never take life for granted! We aren't promised the next moment, so we must appreciate life here and now, in the present. Hug, love, laugh, share... make sure you show your love and appreciation to those that are there for you. Do it today... do it now... because everything you have today could be gone in a moment.

Enjoy the moment. This is related to the previous one. Living in the present moment is a wonderful... though sometimes a difficult and painful... lesson to learn. I like this picture and quote - I think it sums it up pretty well.

Learn how to say "no." I don't think of myself as having been a "yes" person, but I don't like having to tell people "no." Living with chronic illness has made saying "no" more of a necessity. It's not healthy for me to always say "yes" to people... not to mention, my future is so unsure / uncertain (I can't know how I'm going to be affected by my illness at any specific time) - I answer with "yes, but..." (a side note that I may have to cancel at the last minute) or "no," because I simply don't know whether I'll physically be able to do something. I have to thoughtfully consider my own limitations. Thus, I'm learning more about myself.

Trust your gut. I've always been pretty good at listening to my intuitions and trusting my gut instincts, but I randomly struggle with it. When it's related to health, things can get a bit tricky. We place our trust in doctors, and it's intimidating to even consider contradicting or questioning our doctors. But, if you disagree and / or are uneasy with the treatment plan your doctor recommends, you should discuss it with him / her. If you know that something just isn't quite right with your body, you should keep asking questions and seeking treatment (even if you have to go to multiple doctors to try to find some answers).

I feel like living with chronic pain has taught me to listen to my body better. I'm much more aware of when something I feel is different or "off." I don't think I really paid much attention to the subtleties of my body before having chronic pain / illness.

One difficulty with this, though, is that the pain can cloud your thinking. It can be difficult to judge whether something is, for example, bad enough to justify a trip to the emergency room. I know that I have a huge struggle with making any kind of decisions, when my pain gets very bad... so, I'm still working on this.

Acknowledge and accept limitations. This has been a huge struggle for me. I've never liked limitations, and especially not the strict ones that my chronic illness creates for / imposes on me. One of the most important things here, I believe, is to remember that acknowledging and accepting limitations does NOT mean you're "giving up" or "giving in" to the disease. It's just being more aware of what you can and cannot do, and living life within those borders.

I'm not able to spend much time in the sun. I have to break up tasks into baby steps. I have to take frequent breaks. I have to take so much into consideration, when deciding whether or not to do something (where it's at, what the lighting / sound / smells / etc will be like there, who will be there, how long I'll be out, how much walking / standing / sitting is required, etc...). It's definitely an ongoing process to accept the limitations and learn to live with / around them, but I'm learning.

Learn to be flexible. I've always been a planner, and I can't do that anymore because I can't know how I'm going to feel in the future (even in the next 5 minutes). I'm learning how to plan differently, by making lists of things that I need (or want to do) - I write if there's a deadline or specific priority to it, otherwise I don't put a date on it and just tackle things as I feel able to.

My husband and I are having to learn to "wing it," by just taking things one thing at a time. That sometimes means we cancel plans at the last minute, which both of us absolutely hate - we don't like it affecting / impacting other people. We've actually brought some humor to the necessity to "wing it" (much thanks to my husband for always being able to make me smile / laugh) - it makes things a bit more bearable, but it's still frustrating (especially when it impacts others).

Be patient. One of the lessons that can be learned from living with chronic illness is patience. What a huge challenge this is for me! Being patient is reinforced by many of the challenges and limitations we face - we live each moment not knowing what the next moment will hold... when the pain is going to worsen or return. It's a learning process to be able to live in the moment and truly enjoy what is happening in the present.

Learn how to ask for and accept help / assistance from others. I'm so used to being the one to help others... it has been very difficult for me to learn how to ask for help from others... and then to be able to accept that I need help, as well as the help that others offer me. It's an ongoing process, but I've gotten better at it. I don't like feeling that I can't do so many things, especially simple things that most people never consider to be a challenge at all. But, I've found that it's usually more painful to refuse to ask for help, than it is for me to accept the help of others... if nothing else, it's easier on my physical health... it's still a struggle emotionally.

There are many other lessons I've learned and / or am learning, but these are some pretty important ones.


Lessons Series:
Lessons: Learning the Hard Way (Part 1)
Lessons: Learning the Hard Way (Part 2)
Lessons: From Suffering to Empowered
Lessons: Learning From Life With Chronic Pain
Lessons: Learning to Accept Imperfection (Part 1)
Lessons: Learning to Accept Imperfection (Part 2)


This post was written as part of the Health Activist Writer's Awareness Challenge (HAWMC).

Fear in the Life of a Chronic Migraineur

Selena, of Oh My Aches and Pains, is hosting the October 13th edition of the Patients for a Moment blog carnival. This month's topic is about fears: what they are, how you face them, and what you do to overcome them.

Fear is something that I try to ignore - you know, just sweep it under the rug. But, fear in the life of a person with chronic pain builds up quickly, and it cannot stay contained under the rug for long... it must be acknowledged and dealt with.... much easier said than done!

Fear is a constant struggle for those battling any chronic illness. The fear of being unable to complete a task, fear that the pain is going to become  or remain unbearable, fear that medications aren't going to help, etc... These are things that we battle daily, almost continually. Fear runs through all different areas of life - physical, emotional, spiritual, personal, professional, relational, financial, etc...

My fears are numerous and many are unspoken. Most of them are centered on the future... Will the pain ever lessen or cease? Will I ever live a "normal" life? Will I be able to return to and complete graduate school? Will I be able to return to work? Will I be able to have kid(s) - and be the type of mother I want to be? Basically, what kind of future can/will I have with chronic pain?

Fear and depression are both familiar to many people that live with chronic illness. I fear falling into depression... yet again. I fear depression's hold on my life. I fear being thrust into the darkness and the feelings of loneliness that comes with depression. But, fear casts me farther into the depths of depression.

I try to lead as close to a normal life as I can, despite having chronic pain; but it is difficult. My pain can become debilitating and take me out at a moment's notice... for an unknown amount of time. It's difficult to plan or commit to anything ahead of time and I hate having to back out of plans at the last minute.

The irrational (but very real for many living in chronic pain) reality is that there is even fear during the "good" times. When I feel "good" (a relative term), I find myself consciously fighting fearful thoughts that the bad will soon come/return to ruin it.

I honestly wish I had a list of ways to overcome these (and other) fears, but I don't. My advice is this:

1. Be honest with yourself about what your fears are.
2. Share your fears with a trusted friend or loved one.
3. If you feel that you cannot share or handle your fears alone - seek professional help.
4. Know that you are NOT alone!