Airplane Resolutions

So I’m 6 hours into my 9 hour flight from Honolulu TO Auckland and I realise I’ve probably already caught up on more movies on this plane than I have in months at home. I’ve watched “Stuber”, “Wild”, and “Godzilla: King of the Monsters”.
6 hours of comedy, life challenges, and monster movies, and I’ve come to realise some things about my life.
Now, most people like to make new years resolutions…but not me. I like to make long plane ride resolutions. Why, you may ask? Well think about it… What are you most likely to keep a promise to yourself from- A night of drinking, partying, and general debauchery? OR, a really long plane ride where you’ve been forced to TRULY THINK for hours after the boredom of too many movies in a row kicks in?
Exactly.

2010-2019
I faced some really hard realities about myself and my life this decade. I’ve dealt with very difficult situations, and they have taken quite an emotional toll on my mental and physical state across the board.
I won’t share all of them here.
But I will share what going through them has taught me and how it’s helped me move forward in a positive way.

1) I forgive you.
I forgive those who have hurt me. I forgive those who have harmed me physically. I forgive those who have harmed me mentally. I forgive those who have cast me out. I forgive those who have spread lies. I forgive those who hurt me because they hurt themselves. I forgive those who have cheated on me. I forgive those who have wished me harm.
I forgive you.
And I forgive myself for holding onto the hate and dispair that I carried for so long because I could not allow myself to let it go.
But I have… I’ve learned to let it all go.

2) I’m not afraid to be alone.
I’ve spent so many years thinking that the key to my happiness was waiting for me in another person(s). But this decade has taught me that being alone and happy is so much better than being in relationships with the wrong people. Nothing is worth staying in relationships where you are undervalued, abused, disrespected, or manipulated.
I still believe in soul mates. I always have. But I now believe they don’t have to be romantic. And we can have as many as we like. It can be our family members, our friends, and strangers we meet along our journey.
I will never again settle just because I think I’m unworthy of love. I won’t settle just because I’m sick and my mortality scares me. I will be alone as long as I like because I realise I have never been more surrounded with caring people than I am now. Love takes many different forms, and I feel truly relieved to finally realise that.

3) My illness doesn’t define who I am.
It’s been 12 years since I was first diagnosed with an autoimmune disease, and 7 since it turned severe. I’ve been pricked with more needles than someone should in a lifetime. I’ve been prescribed all manners of chemical warfare to irradiate an incurable disease that is destroying me from the inside out. One day, sooner than me hitting old age, I will die from this disease.
But I am an entire person without it.
I am fighting every day to make this life a little bit longer, and every day I succeed just a little bit more. I live for my passion of cooking, and song, and coffee, and cats. I live for my family and for my friends.
I live for myself for as long as I breathe air on this earth. That’s all that matters.

Our footprints

I recently ended a two week long road trip around the South Island of New Zealand. A trip that I never thought I’d be able to take at this point in my life.

At 36, I never thought I’d be struggling under the burden of multiple chronic illnesses. Never thought that I would live each day in pain and fatigue, wondering if or when it would all end. In March of 2016, one of the eleven doctors and specialists that I saw on a regular basis told me that I was living on a clock. A clock that no woman in her mid-thirties should have had to think about. A clock that was slowly counting down the time unto which my life would end. I had time, years in fact. But not decades, like most my age looked forward to. Ten years minimum, fifteen if I got lucky.

I took that news on my own, silently in his office, starting at my hands as if they were supposed to provide me with the answers he didn’t have. If they could find a medication that worked for me, more time could be bought. But they hadn’t found anything in the years leading up, and every day my disease turned more aggressive. Every time I visited a doctor a new diagnosis would be presented, or the bad news of a failed medication would be shared. Years of allergies and intolerance to the leading drugs for my diseases, countless failed treatments, and pain, so much pain. And then to hear that despite all my optimism I was going to die sooner than maybe even my own parents…

Five months later I landed in the Intensive Cardiac Unit at Queens Medical Center for ten days. I survived a “multiple cardiac event”, according to my cardiologist and the medical team that looked after me. Despite my doctors projections, my body had other ideas in mind for my time left on earth.

But something changed in me the night that I almost died. It’s not that I wanted to go… Sure some of us living with chronic pain have been down that road where we wonder if the pain is worth going on. Nothing as dark as giving into those thoughts though. And in the middle of my second heart attack of the night on my third night in hospital, apparently when the pain became too great that I actually blacked out, I had an epiphany.

No, I did not “see the light“. I mean yes, there was light, but clearly it was the doctors shining something in my face trying to wake me. I did however feel like I had a choice. A choice on whether to let go, or to continue on.

I don’t know how long I was in that place, probably only seconds. Later my doctors told me I could have died. And I knew if I had been willing to give up, I would have. But something had changed. Despite all the pain, and the knowing I didn’t have long, I still wanted to continue. Something told me that I had purpose.

A year and a half later I finally understand what that is.

Earlier this year I made the life changing decision to move to New Zealand, as healthcare was more accessible for me there as I was a citizen. More so than it was in the US, as it wasn’t affordable, even on Federal Disability. It was a chance to turn my life around as well, live healthier, make friends, maybe find my purpose.

I started bi-monthly Infliximab infusions in June, and had successfully gotten myself off most of my hardcore painkillers by October. I’d even lost a large portion of weight that I’d gained from years of Prednisone usage. I got some new hobbies, joined groups, and made friends, so many friends. I even started dating for the first time in two and a half years.

Sure, I was still in pain. My disease didn’t magically disappear because I moved. Chronic illnesses don’t drift off when you find love, despite what Disney movies try to teach us. I still spent multiple days in bed, fatigued beyond repair. Lung Disease reared its ugly head in a new diagnosis in August. Lupus followed soon after..

The change was that I felt I was around more people that supported me. People didn’t treat me as pitiful, and because of that I was able to let the real me shine through. I reclaimed the person I used to be, maybe not in body, but definitely in spirit. And I realise now it’s all because of footprints.

Just like others footprints made an impression on me during my illness, my footprints were helping others too. I accepted the love and generosity of friends and strangers in Hawaii because my blog had reached them in ways I didn’t know. I couldn’t see that the knowledge I’d learned in my own experiences were helping people just as those whose generosity helped me. Just by listening to a friend, or sharing a meal, I was leaving footprints on the journey of others, just as they leave theirs on mine.

Today as my partner and I concluded our two week vacation, one that I wouldn’t have taken had I not left footprints on his journey as equally as he left his on mine, I had my epiphany. We were talking with our Airbnb host, just as we were getting ready to depart for the airport, and she shared that she had lupus. She shared this only because I shared that I wrote a blog about living with invisible illnesses. Through this tiny piece of information she came to not only understand that she shouldn’t feel alone, but also some references I gave her for support groups. She had no idea the resources that were available to her, feeling isolated by friends and family who couldn’t or wouldn’t understand.

On the plane ride home I thought about my footprints… If I can leave pieces of myself behind, to help or to grow or to love, then no matter how much time I have left, that time was worthy. I have and will continue to make a difference on those who choose to share my journey with me, just as I share theirs.

Our footprints, my footprints, matter…