A fork in the road

The path to recovery. Is there one?

Part 2 of a series on recovery. Last week we opened the door to recovery which led to a great depth of conversation in the comments and some whoppers of insights being shared. What’s been your biggest lightbulb moment on your journey so far?

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I remember gazing out of the window whilst sitting with my PIPs (Personal Independence Payment) forms in one hand, as if representing one path, and the path of research and making changes as if representing another.

Photo by Burst on Unsplash

On the one hand, I knew the expectation was to stay in my disabled state. From a medical perspective (or external interest) there was no hope, no belief that I could get better. Medical advise was not to bother making any changes. Upon asking, I was told there was no support available for me.

I also knew enough through the research I had started that a case for disability support would most likely be rejected. Not just once or twice but with the potential to be rejected over and over again. I’d already embarked on the journey of reducing stress in my life having woken up to what was true for me

stress was killing me.

After having had lived in a chronic state of stress for several years by this point, I knew enough to also know that I didn’t want to add stress to my life, I was actively seeking out ways to reduce it.

Photo by Erriko Boccia on Unsplash

The alternative path (as it felt at the time) was that I keep on researching the condition I’d recently been made aware was the 2nd most disabling disease a person could live with. Alongside which, keep on making the teeny tiny changes I’d already started. Changes I was soon to realise were what would lead to big change in the future, but at this stage did not have any awareness of at all - nor anyone around me who believed I knew what I was doing or should have a voice in the matter of my health at all.

Where on the one hand, it felt like the first path presented no option of improvement, the latter path came with the inkling that I might, just might get better. And by better, I had no idea how little or how much, just that I might be fortunate enough to see some improvement vs a guaranteed none.

I realised too that the second option was the one that made me feel most hopeful.

Though at the time it felt like all I had was hope, its only when I later came to look back I realised I had:

• Hope acting like a light on a darkened day

• Belief – I matter. My health matters.

• A choice - to stay that way and listen to everyone else, or to choose another way and tune into what I knew to be true. Even though it meant disappointing everyone else.

• A relentless source of determination that around these years I had fallen out of favour with and at times, I wished I’d no longer had.

• Mental strength (note this is different to mental wellness. I was still severely depressed and highly anxious)

• Courage – courage to ask questions, state my needs. Courage to explore other options, other avenues. Courage to set off into the unknown all alone – trust came later. In fact, I later came to realise that I always attracted what I needed at the time I needed it.

• Exceptional decision-making skills

• A roof over my head

• Food on the table

• Clothes on my back

• An ability to drown out the noise

• An ability to take my power back

• An ability to take responsibility for the dire situation and circumstances I found myself in

• An ability to deal with the discomfort

• Acknowledgement - of the dire situation I found myself in, of the severity of the illness I was dealing with.

• Self-education and an interest in research

• My needs identified

• Intuition

• Clarity on what it was I wanted; the freedom to get well.

Photo by Pablo Heimplatz on Unsplash

I recognise every element of the above as privilege with other privileges including the internet, an iphone, statutory sick pay, car and holiday allowance, a Monday to Friday lodger and a home that I would go on to sell once the latter were no more, gifting me the freedom to continue prioritising my health.

There is also another side to privilege that isn’t talked about as much and is what I’ve come to identify as spiritual privilege. In addition to material privilege, I had learned to drown out the noise around me, tune into my own inner knowing. Got to grips with meeting myself where I was at, doing what I could when I could. Starting with where I was and working with what I had. Asking big questions of myself and then in turn others when required.

Building on the trust and faith I had in myself came later.

All this I see as spiritual privilege and unlike material privilege, we all have access to it. It is unlimited in its capacity. Reconnecting with it is the catalyst for change. I could have had someone paying all my bills. I could have had the best medical team and support in the world. The most understanding of friends, work colleagues and loved ones. But without being able to tap into my own inner resources, overcoming what I have to the extent I have wouldn’t have been possible without my spiritual privilege and ability to connect with it.

I’ve maintained for a long time that there was something at greater play than me. Than just the physical aspect of myself. More than what I had materially around me. The depths of hell that I’ve been to, the challenges that I’ve overcome, enduring relapse after relapse, making space for myself in a world that actively discourages this (at the start I was even told I was selfish) has been the hardest thing I have ever done.

At the start of my recovery journey, it very much felt like my choice was either to stay the way I was with a guarantee of no getting better, or doing something different - which meant listening to what my body was telling me, had already been telling me for a long time and was now screaming at me to some extent, every passing day.

It sounds simplistic. And it really was simplistic at the time of making such a choice and monumental decision. But the road, the path ahead was not clear. It was far from known.

There was much that I didn’t have, in respect of:

• A wayshower

• Any kind of testimonial from someone/anyone who had done it before

• Unconditional love and support

• A loved one paying all my bills

• Endless pots of cash

• An idea how long – if at all – it would take

• A medical team with any understanding or interest in the complexities of the disease or me

• Any guarantees of being able to keep a roof over my head

• An ability to see any gifts in this frightful situation

• Easy decisions to make

• Cheerleaders cheering me on from the side lines

I’m not suggesting that this the only combination of what it takes to recover but I am suggesting that it goes beyond what’s known. It goes beyond what’s first thought. It goes beyond the judgments and assumptions we make. It goes beyond what it looks like from the outside looking in.

It’s as complex and misunderstood as chronic illness itself. But just like with the illness, just because it’s complex does not mean it cannot be understood.

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Share your insights

1. Tell me, where abouts are you on your journey to recovery? Feeling recovered in some ways and not others? Believe its possible or impossible?

2. When you consider these elements, which similarities do we share? What would you add or remove from this list of what you do have vs what you don’t?

3. What do you feel is most critical to recover?

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Further reading

1. Amy - The Tonic
   shared much deep insight into the journey of securing disability payments. Different countries have different systems and in Amy’s case, it was a requirement of the private insurer so that they could reduce their payments. Highlighting that we don’t all always have the same choices to make. In so many countries, we don’t even have a system in place to apply for benefits. An incredible and insightful read:

Disability injustice

2. Last week’s post starting the conversation on recovery:

3. Friday’s Your Story Matters podcast with Kerry Spalding, sharing where she feels her recovery journey first began - it came as a surprise to me even though we shared a similar experience in that respect: