The slow, steady loss of independence, when you have a long running health issue going on, can be pernicious, sneaking up on you before you even know it.

That last statement felt deserving of its own line because its just so powerfully true and, whether you ever prized (or even noticed) your prior independence, or not, the effects of this independence loss can seep into the foundations of your confidence and quality of life like a dry rot that you don’t even notice until its too late to do anything about it.

What makes this all the harder to deal with is the fact that those people you surrender your independence to may be the very ones working day and night to support you in every which way; so, of course, you are grateful beyond words to them, couldn’t live without them…and yet, it needs saying, somewhere along the line you gave up your independence (not to them but) to the situation you are in. After a time, it can feel easier to go along with things being done for you rather than attempting to do them for yourself, which can drastically undercut efforts you are otherwise making to reclaim confidence and quality of life.

For me, coming as I did to chronic health issues in the wake of a first marriage where I had to fight tooth and nail for my independence, demanding it at great personal cost or claiming it in ways that made me feel deceitful because continuing to claim my freedoms is something I absolutely had to do at all costs, the gradual surrender of independence that has since occurred because of my worsening physical limitations has come at a high price, feeling like salt into an already open wound. Before I got ill, I had had to be extremely independent for a long time, raising a child and coping with enormous responsibilities and stress against all the odds yet there was a great dignity to be found in coping with all that and keeping going.

One of the biggest liberties I ever had to fight for and for which I have continued to fight vehemently is the independence of being able to have my own car so that I am free to go wherever I please whenever I want to (and whilst I do insist on having this facility, I do also appreciate I am extremely fortunate to be in this position…one I was not in for a very long time… and should never take it for granted). Of course, that ability to drive is entirely health dependent and, lately, I’ve driven far less than ever, something which has come at a huge cost to my overall independence to do things on my own or with others besides my husband. It’s the one thing (almost above anything) that I dream of claiming back after we move because having the ability to drive will make for a completely different experience of the spacious location we have chosen to relocate to compared to being tied to asking for lifts when I want to go somewhere, given it is not exactly on the beaten path. The feeling of being “trapped” is one I’ve resisted all my life and one which chronic health issues has forced me to explore long and hard!

However, for the first time, we are faced with seriously contemplating getting rid of my car rather than spend any more money getting it into shape and the decision of whether its even “worth” getting me a new one of my own has inevitably come up, rattling my cage about this sensitive issue. I realise, two cars is an absolute decadence these days when only one of us works and, besides, the few times I go out on my own hardly justifies it and my driving has significantly lessened since the year of lockdown knocked my confidence and kept me more at home, followed by a spate of ill-health that meant I lacked the ability to venture far. Yet, and it deserves being allowed to express itself, some part of myself is still crying out a long and lusty “Noooooo” at the very idea of giving up my one last claim to independence. Almost 20 years into this far better marriage, where nothing has ever been taken off me against my will and in which I am fully respected as an individual, I still baulk at the idea of not having my own wheels.

Perhaps its because I had to fight so very hard for them…because, for years I had no car and was not even allowed to learn to drive, something I finally did “in secret” after my daughter was born (purchasing a car cheaply off a family member as the only way I could afford one) and which, when it came to light, caused massive conflict with my ex, who vehemently did not want me to have my own mode of transport. My defiance over this ultimately becoming the first step towards divorce, partly because it meant I was able to reclaim some independence, widening my options for work and social life, and also because it gave me the confidence to envision life on my own again. In that marriage, my lack of independence was relished by my partner, for instance when I was made redundant and had to lean into his salary, earning a pittance freelancing from home (his idea) while raising my child, which was used to undermine my confidence, keep me isolated and clip my wings. The degree to which I then had to then fight and push and demand to claim my right to drive has, without doubt, informed my determination to keep on driving for as long as possible. Driving has come to signify my very right to survive and to thrive.

So, whilst this post isn’t about driving and cars per se, the point I want to make is that when these resistances come up inside of us to making little surrenders, they need to be listened to…not just ignored because they are “petty” but really heard out, because so often they are just the tip of the iceberg of so many other freedoms surrendered in the name of health limitations, practicality and other situations (such as having to give up an income to raise a family, etc, which can be so hard for a woman to do, having fought as hard as we have to be entitled to go out to work). These things can really rattle us when they come up for negotiation because we have had to do so much to claim and safeguard them in the past!

When you already struggle to go out or travel very far alone because your health is unreliable, handing over the keys to your freedom is like saying “things will never get better than this”. Its tantamount to saying “I’m an invalid now and will only ever manage to do things when there’s someone else around to take care of me from now on”. Or its like saying “we have to be in perfect agreement before we decide to do something” which means, and we know it, that we will back down on some of the things we really want to do because we don’t want to inconvenience other people. Depending on your personality type, this will affect you to varying degrees but it will always affect you at some level. I think back to my extroverted mother and all she gave up when she married my introverted father given she was utterly reliant on him taking her everywhere. It wasn’t until he died that I realised the extent to which she had felt hemmed-in all of her married life as she suddenly exploded into life, travelling hither and thither and told me just how much she regretted never learning to drive. That message drove itself home to me and I knew then, as I know now, that it is in later life that driving will come to mean even more to me than ever as it will keep me busy and mobile against all the odds. My 89 year old father-in-law has just been told he has to give up driving due to his eyes and he is, without doubt, in a state of mourning because of all that this loss of independence signifies to him. I have a few decades on him yet…and don’t plan to give away my license until I absolutely have to but its a case of use it or lose it.

For me, it feels like the top of a slippery slope to give up my own car because where freedom to drive goes, other freedoms, for instance to make new friends or say yes to things I want to do alone or that my husband doesn’t also enjoy doing, will go with them. Once I don’t have wheels, it will be easier to assume I can’t get to things and I can all too easily forecast how this would become a limiting mindset, compared to the way I used to be (which was to be spontaneous and try new things whenever I could). I think back to when my daughter was little and there was just the two of us, before I remarried; I would strap her and the dog in the car for a drive and we would end up 80 miles away at the seaside, though I had had no idea where we were going when we set off; yes, so many adventures began with my ability to drive. I am ADHD and its so important to me, as an expression of my natural-born impulsivity (which has taken such a knock in recent years), to be able to act on that impulse to move myself out of a rut and into a better feeling place whenever I feel the urge to go somewhere and break-up the monotony of life. This is literally “who I am” and have always been, in my personality. However a life of having to plan every movement in recent years has only made me desperately hesitant, lacking in the confidence to follow through on even the most life-affirming urges when they occur to me. Also, driving offers me the kind of spontaneity that is often missing to me at times when my own physical movements are sometimes quite limited or painful because I can over-ride that with four wheels.

Which leads me straight into another observation. As both someone with connective tissue issues, fibromaglia and widespread nerve pain, also as someone with the proprioception challenges of autism, my body movements can feel, at best, clumsy or awkward and, at worse, clunky, painful or limited. Driving offers me an alter-experience of what it means to move. Once I had learned to internalise the feeling of “how to drive” which was, for me, a sense memory (reliant on frequent repetition) more so than a logical process (I still struggle to think about or describe the actions that constitute “driving” and I could never teach anybody), I was able to make my car into an extension of my own body and then enjoy the fluidity and grace of a car’s movements as though they are my own. It’s somewhat similar to how dancing or swimming makes me feel, as in graceful and fluid (compared to walking or running). A good drive can lift my spirits similar to dancing, painting or listening to music. The fact that the experience of driving fuels my dreams, similar to how I sometimes have dreams about swimming or flying using my arms, tells me this is a positive alter-experience for me to have on a regular basis and to make sure I include in my life as a counter-experience to far too much time feeling as though my body is a hindrance. What these dreams have in common is the sense of extreme freedom of movement, something I yearn for. The same doesn’t apply when I am not the one making the car move, as a passenger, because it lacks the sense that it is my brain and limb motions that are actually causing the car to glide along, as an extension of my own body; so, its important that I am the one doing the driving some of the time as it boosts my physical confidence and sense of wellbeing (people that think they are doing me a favour by always suggesting they drive me somewhere don’t realise this). By the way, I consider myself a pretty good driver and this is another plus point (in a life of limitations and physical shortcomings).

So I’m still holding out for having my own car once we land in our new location or, at the very least, claiming half ownership of the other car to use as I please (that being the second option, though not my preferred as it won’t always be convenient for me to use it). Not for petty reasons, but all of these!

I also think the fact of my autism plays a not-insignificant part in this issue for me because, though only lately appreciated in all its full-autistic glory, I really do have to be able to secure time alone doing things for myself in my own way, every day, or I really do start to suffer for it. No matter how close I get to someone, or how much I enjoy spending time with them, I have always had to be able to claim my own, independent time away from them for several hours per day and that’s never going to alter because its hardwired into who I am. Without it, I really start to flounder in my sense of well-being and I have heard similar from just so many autistic women in relationships with partners who, hopefully, understand.

With that in mind, I have to safeguard a life where I can continue to do things under my own steam and not always be reliant on others; something that is only going to get challenged more as I get older or become increasingly infirm (a very real challenge for older autistic people). Much as I love my husband, I don’t always want to be doing things together joined at the hip and it only makes me feel more “chronic” in my health when that starts to happen for any prolonged length of time (as happens, for instance, in winter when I often struggle to go out for walks alone for weeks on end when the weather is bad and my movement badly compromised). Long phases of reliance get me down more than almost any other thing, not because I’m not grateful or don’t enjoy the company but because its part of my make-up to NEED to feel self-reliant and free in my impulses and choices, the ability to do things my own inimitable way and without justification or apology and to spend time inside my own head when I’m having certain experiences and not always having to translate my thoughts into conversation with others or worry about whether I am being good company.

Even as a child, my recently found diaries have reminded me, I spent an inordinately large portion of my time alone each day and especially in the school holidays. I would engage with my mother when I got home but then disappear to my own room, my own head, my own way of doing things and would never feel the need to discuss or explain my homework or anything else I was engaged in with anyone else until I went back to school the next day. I would entertain myself in my room until well after midnight most nights as a teenager and all the time quite perfectly self-contained. In fact, the ability to be just so autonomous for quite a few hours each day was essential to my wellbeing (following the high-intensity social engagement and overstimulation of school) and, had I had the kind of parents who interfered much more in how I allocated my time, I wouldn’t have done nearly so well as I did. Looking back, I was so fortunate that they seemed to just “get” that I needed (and could be trusted) to get on with things on my own.

It’s one of the reasons I became that kind of parent to my daughter, because I could tell from the outset that she was so much like me and really needed that autonomy and time alone, learning and engaging with things in her own way without my interference. I never stood over her homework or demanded to check it or to get involved unless she asked for my help and this served her so well (so many times, she’s thanked for being that kind of parent and, with a first class degree under her belt, it obviously didn’t let her down). In a nutshell, I valued her need for independence because I always valued it so very much about the way I was raised…and because I knew it was a need, not merely a preference, to be so.

Which is what makes chronic health issues such a bitter irony for me! To have been so determined to do things my own way and to maintain my independence at all costs, only to have to lean so hard on others, has been a hard life lesson indeed; one that has taught me not only to be thankful there were others to lean on but also to continue to carve space for my own independence, against all the odds, because its still just so important to me and can’t simply be overlooked. My core need for independence has to be factored into any health plan or I am simply not going to enjoy any health at all!

Yet, looked at another way, having to stop conventional work 17 years ago because of my health also brought me another kind of independence; one of the many paradoxes that have arisen out of some of the hardest experiences of my life from which, in hindsight, so many gifts have also arisen. One of those gifts is the fullest appreciation I now have for things that I used to take for granted. Compared to a life where I would have had to continue to work in a typical office cheek-to-jowl with other people every day for decades, I thank my lucky stars that I was forced to stop that kind of life and find another way. The years in between have brought me so much self-understanding and countless new areas of success (if measured by a different yardstick to “normal”). I count myself as one of the most independent people that I know, internally speaking and because there are very few things that I “have” to do in the average day.

Regarded in that light, things couldn’t have worked out better for me as I lead a remarkably independent life…free of the burden of “having” to earn a steady income (thanks to my husband and the way we have structured our life to fit that), which makes me grateful beyond words. Within that life, I’ve held onto other ways of feeling contributory and independent such as being in control of the finances, taking on numerous other responsibilities in our shared life together and, of course, being such an active parent. However, I’m not so grateful for what I do have that I would so easily give up a freedom I enjoy so much, such as driving, just because it would be so very easy, even convenient, to do so. I will be continuing to practice my solo driving this year, making sure I get to keep on claiming some unapologetic alone time, to follow those random impulses to go somewhere, to explore new places and basically appreciate a mobile life as fully as I still can for as long as I can. Sometimes, its the almost losing of something that makes us appreciate it all the more!

On that note, I’m heading out for a drive.