Rolling with the punches and grieving goals lost

The next milestone in life has been looming…. well, for 40 years. 

Creeping slowly up. I had my eye on the prize for a while now. I had a plan and some goals. I was going to start my plan six months before my birthday and embrace the 40 I wanted to live. But then life throws a curveball. 

Depending on how you look at it, I have often been a couple steps behind my peers or up in front leading my age cohort a few steps ahead. 

When I showed up at university it was a full two years before I could head *ahem* legally enter a bar with my roommates. I left school a year early in B.C. and headed to Ontario where they had Grade 13 at the time. My 17-year-old self was wrapped up by 20 or so “older” friends who definitely threw an epic party for my 19th . . . or so the pictures tell me. 

At this stage of life my friends are largely the parents of my kids’ friends, and again it seems like I am the little kid running a few steps behind. I definitely benefit from their wisdom, mentoring and networking. I have been to some great 40th parties – from restaurants to backyards. I have seen plenty of bags packed and trips taken to celebrate this milestone of middle age.

In this new normal of COVID-19 everything has changed. My vision for 40 was never a big party (in fact I can’t think of anything more stressful) or a girls’ trip to cut loose. We had a shared vision for a big family trip – the first international trip with the boys – which is wisely on hold.

Instead I wanted smaller, quieter. I had hopes for a celebratory bike and donut ride with bike friends, I had hopes of backyard wine and fire with neighbourhood friends, I had hopes of downtown umbrella drinks with kid-free friends. . . 

It’s not to be and that is okay . . . remarkably okay actually. As I see the world spiral in a new direction and we endure the anxiety of reframing what our future looks like, I realized I did my grieving months ago – before all of this. 

And I didn’t know it was happening at the time.   

About this time last year the B.C. government decided that all patients who use a particular treatment must switch to cheaper biosimilar medications. Basically, it was like being forced to generic medications from a more expensive brand name. I have had rheumatoid arthritis for more than 10 years. Symptoms developed when I was closing out my 20’s, I was diagnosed at 30 and started the long painful journey to find a treatment, which was finally successful four years later. 

Prior to treatment it was devastating. This is not the “touch of arthritis” that plagues a joint or two as we age or suffer wear and tear on joints. This is a full-body fatigue, heart damage, joint pain, lung and liver damage, eye damage . . . The treatments aren’t great and like many diseases are damaging in their own right. Some are typically used to treat cancer. For me most of them didn’t work. 

And then suddenly one did and a few months later my RA was knocked into remission. It was a remarkable turn around and I felt free. I finally had some control over pain and I was able to live life on my own terms again.

I had five and half years in remission – occasional blips but health was so good I was a delightful puzzle for med students to solve during checkups. 

I was looking at 40 as the year I challenged myself. I set cycling goals and created plans to meet them. I was going to train hard all winter, I added some cross training and spin gym time. I was going to tackle some races and new disciplines. My celebration of 40 was going to be about pushing myself harder and doing pretty much my favourite thing to do – riding my bike. It wasn’t about parties or tropical vacations, for me it was going to be about startlines and finish lines. 

I avoided the forced medication switch as long as I could, and last September I had no choice but to make the change. 

And it failed. Hard.

I was back where I started all those years ago. About three weeks after I entered a race with a real chance to qualify for the Gran Fondo World Championship (grrr, the tragedy of a flat tire . . . ) I could barely get out of bed. I was struggling to work and look after my kids. It was constant pain and loss of function.

I was angry.

I understood the government’s position to move everyone and save millions but I was so so frustrated at how hard it was to get my health back. There was another blow when my doctor warned me that my previously successful meds might not work anymore even if I could get the back. 

I was playing mental pingpong of the ‘what ifs’ . . . Even sleeping was painful. My mental health was getting lower and lower. My vision of living out a dream at 40 was suddenly replaced by desire to simply live. 

A couple of months in I had an epiphany. I realized I was grieving.

I needed to accept where I was: that today is about fighting through pain and existing. The hours I had thought would be training were now going into navigating through the healthcare system. The time I thought I would be in the gym would need to be spent breathing in all the goodness that was still around me. It was recognizing that a year before I might have been running the same trails I now struggled to walk but I was still surrounded by the same beauty. It was seeing small hands I had held for years offering help when they could.

When we are in a state of grief, sometimes unexpectedly small things cause big wounds. I like talismans and tokens that are daily reminders of future goals and past victories. Stuck in healthcare limbo but with change looming on the horizon I lost the mementos from each of my favourite cycling events. They weren’t valuable but they were priceless daily reminders to have faith in myself. They were simply glasses that shattered but the blow felt like life was taking those past accomplishments too. 

Around that same time I did win a round. With the support of my doctor we fought and won my old medications back. And my health is better but it’s not the same. I am not in remission. There are things I can’t do, or can’t do for very long. My fitness has regressed years.

I still have moments of grief and loss for the health I had and lost. I am a person who needs goals to focus on. Part of my enjoying the now, is seeing how it supports the future. It feels like I have had that direction robbed from me. I need to take my time to mourn that loss.

I have needed to shift my focus from goals to can dos.

I will ride my bike this season and I will cross finish lines.

I have faith in my drive and determination. I am fueled by my grit.

I have accepted my story has a new beginning. I know I am stronger than this moment, this now. 

My vision for 40 is to set my wheel on its new startline and see where the road goes.

UPDATE: Progress is strong, day to day is remission! With goals and dreams I am definitely moving forward.

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