yoocan - Amelia Holland - SOME THOUGHTS ABOUT SICKNESS AND SUFFERING
DAILY LIVING & MOBILITY

SOME THOUGHTS ABOUT SICKNESS AND SUFFERING

Rare Disease & Syndrome

Amelia Holland

AWARENESS

During this time of COVID I feel like the world is waking up to chronic health issues & the impact it has on families across every area of life, socially, mentally, economically & physically just to name some. It’s so sad to see the world in this state but if there is any good from this crisis, it has highlighted people who have suffered from chronic health or pain & helped them feel seen & validated in ways they haven’t before. That said, not to take away from the current situation but to share an understanding.

 I’ve learned the gift of suffering is that it illuminates humanity in a different way. And it brings a lot of things into focus that was not in focus before suffering.

MY STORY

20 months ago I had brain surgery for Chiari Malformation, a brain & spine condition, & the recovery has been very long, painful & complicated. Every day involves chronic pain, problems walking & feeling like my right leg is broken in 1000 places. I also lack much movement in my neck. Your story might be different, but you may relate to some of these feelings:

EXPECTATIONS AND SKILL SETS

I learned some people are great with short term trauma but it’s a different skill set to stand alongside someone for a long journey, & that’s okay. Demanding you heal on a timeframe that’s convenient to someone else or yourself only adds pressure & trauma. I want to be big enough to handle complexities in other people. So I hope I have learned to be the kind of friend that can do the long haul, but also have compassion & understanding for the fast-paced world I used to be a part of too & those that cannot. No judgment, just different skill sets.

ASKING FOR HELP VS PRIDE

I’ve learned trying to do it on my own so people wouldn’t think I was a burden doesn’t work. It has been stretching & uncomfortable asking for help & brushes up against my pride - the contradiction when I need people the most they hear from me the least, not letting anyone see the full pain, so we isolate & convince ourselves we are better off doing it alone, but it’s a false nobility. Also when you aren’t well, you don’t have the capacity to reach out to see people or make new friends either. So you feel a bit lonely stuck somewhere in the middle.

TOLERANCE VS WISDOM

I thought a high tolerance of pain was a gift, but I learned I had normalized it too much & hadn’t fully acknowledged the seriousness of what I was going through so was doing further damage to my body by pushing it too hard. I had valorized “no pain, no gain” & just powered through thinking it was the right thing to do. I thought it made me braver &   stronger which is so silly in hindsight because, in fact, my body needed me to stop, pay attention & listen to it. Or I would watch documentaries about world suffering & tell myself I’m so lucky in comparison so to just try & put my pain out of mind.

BALANCE OF EXPECTATIONS

Finding the balance to still fulfill my dreams & keep moving forward, but being realistic in my expectations was, and is still a challenge. The hero complex had to die & I had to accept a changed capacity. Not a lesser capacity, but a changed capacity. I learned I’m not less of a person if I can’t do as much in a day as I used to. I’m still me. I still achieved what I achieved. I can still create ideas & produce excellent work ... I just find new ways to do things, different ways to work around a changed physical capacity.

KEEP MOVING FORWARD

During my healing, I still worked, sat on a board, started a new business & I’m looking forward to an opportunity working on the 2022 World Cup. I still move forward, but I apply more wisdom to how I do things now. It takes me days to recover from any event so I need to consider what things are worth the consequences? Sometimes I don’t know until I’ve tried. I know if I never leave the house I will suffer less, but I wouldn’t live a rich life & the hope inside me would begin to die. So instead I prioritize smarter & ask myself, is this the space I want to use my energy? Will I be glad in the end if this is what I did or didn’t spend it on?

CELEBRATE THE WINS

I’ve learned to celebrate the wins. 20 months ago I could only function for around 6 hours a day but I’ve built it up to 8 now. Some days I spend more energy & rest more the next. I can celebrate the 2-hour growth or grieve the  9-10 hour loss of the pace I could run at pre-surgery. A simple perspective choice.

YOU CAN STILL BE A GREAT FRIEND TO OTHERS

It upsets me when friends have said what they’re going through isn’t as important & have held back on sharing their life with me. YES, your pain IS important! It’s not a comparison, we do life together, the ups & downs. During my recovery, I went through a relationship breakdown (outside immediate family) that shattered me into a million pieces & questioned my very belief system & the way I knew the world to work. I don’t understand it, I don’t know what happened or why, I only know a crucial part of my support, beliefs & hope was gone. Little traumas, big traumas, they all matter. In some ways my little trauma felt bigger than the big one as it affected my world view, so I’ve learned when someone is sick or grieving, don’t pull back on sharing your heart with them. Give the gift of letting them into your space too. It’s been my joy to remain a friend to others in this season & I hope I’ve done it faithfully & well.

FINAL THOUGHTS

Some final thoughts I hope can encourage someone; your pain is not too much, there is no “too hard basket” & no one should make you feel like there is. You are not weak for needing rest. You are not disqualified & I say sorry on behalf of anyone who made you feel like you are. Trust your own instincts, lead yourself, don’t give other people’s opinions more weight than your own. Show compassion, patience & forgiveness. Listen well & remain teachable & reachable. Love much, be gentle, be kind.... you never know what someone is going through behind their smile.

These are just some thoughts I’ve had as I reflect on the world at the moment, my surgeries & the topic of sickness & suffering. I hope it’s helpful to someone.

Tags: , , ,

EMPOWER OTHERS!

Share this story to help change someone's life

WELCOME TO YOOCAN

THE GLOBAL COLLABORATIVE COMMUNITY FOR SHARING EXPERIENCES AND KNOWLEDGE BY AND FOR PEOPLE WITH DISABILITIES, SO NO ONE FEELS ALONE.

BY CREATING AN ACCOUNT YOU AGREE TO THE TERMS OF SERVICE ANDPRIVACY POLICY.