August 8, 2016

This post is a little different from most, by which I mean a whole lot different – it does not involve dogs (except for the gratuitous shot above), avocado on toast or a rooftop bar.  Rather, I thought it about time (for reasons that I will come to) that I shared my experience with two neurological conditions that I have, namely schwannomatosis and a hypertrophic neuropathy.  Specifically, I wanted to talk about how strength training has made a material difference to my engagement with them.  To say that I have been in two minds about whether to write about these neurological quirks is, to put it mildly, an understatement.  The thought of putting such personal information on the internet or, worse, that people will think that this is some kind of online pity party is terrifying.  However, both of these conditions are (apparently) on the rare side of life and I certainly wish that when I was diagnosed I had more information on them beyond textbook definitions.  As such, this is one of the few things that I can write about that could make a difference to people so, here we go…

First up, a little caveat on the scope of this post.  I am not going to go into detail about these conditions, it’s not what this is about.  I have linked to more detailed explanations above if you wanted the medical low down.  Rather, this is about how I experience them as a person, their impact on my life and the (perhaps surprising) coping mechanism that I found.  That said, to explain all this I will need to give a little information as to how these things manifest in my day to day life.  However, I want to be abundantly clear on one thing.  These conditions mean that I have spent a lot of time in neurological hospitals.  As such, I know better than many how unbelievably lucky I am to be so incredibly healthy and that there are many people in the world who wish that they had life as easy as I do.  What I am about to share is simply to provide some context to the issues I have experienced and how I have responded to them (the good and the bad).

Okay, so what are these strange sounding conditions and what do they mean?  In brief, schwannomatosis involves the growth of multiple tumours along the nerve (in my case along my right arm, hand, ribs and neck).  For me, they are perfectly benign and I am totally a-okay in terms of some of the more worrying connotations that tumours can give rise to.  What it does mean is pain.  To be honest with you, sometimes quite a lot of pain.  The pain is constant but some days is completely manageable, almost imperceptible.  On other days, it brings tears to my eyes and it’s all I can do to stop from crying out loud.  This does, of course, have the usual consequences – sleep etc.  However, the worst thing is when I am speaking with people and I know that it seems like I have checked out of/am not engaging with the conversation and it makes me seem so rude.  But, I promise you that’s not it.  I am just desperately trying not to react to the pain, which can take a huge amount of focus.  Also, one of the issues that a bad day can trigger is spasms in my arm, which are not insignificantly embarrassing in public and it takes an awful lot of attention to try (sometimes unsuccessfully) to stop that from happening.  The condition is progressive, and the only treatment is surgical removal or some fairly powerful daily medication that comes with a list of side effects that I am not able to easily ignore.

Next up in this magical mystery tour is the hypertrophic neuropathy.  This one is a little easier to explain. In short, it is a swelling of the nerve in my right arm (possibly attributable to a tumour).  To quote my neurosurgeon, the nerve keeps growing and, ultimately, could stop functioning.  As he so glibly put it, you came in and we were worried about the schwannomas but actually this is the condition to be concerned about.  As delightful as it was to be told that I was looking down the barrel of paralysis, this is an outcome that I steadfastly refuse to acknowledge as a possibility.   However, what it has started to cause is a certain numbness in my hand and the strange sensation every so often that something is crawling on me when it’s not (not great when you are something of an arachnophobe).

So, why all the oversharing? It’s this.  Being told, in no uncertain terms, that you have a condition where you will continue to develop tumours in your body, tumours that cause you severe and constant pain and that there is very little that can be done about it ‘oh and by the way you might lose the use of your right arm’ sucks.  I’m sorry, there are no doubt better and stronger people in this world than me who can hear that and be cool with it but, for me, it sucked.  Big time.  I had hoped to meet with the experts, get a magic pill, and all the pain would go away.  Instead, I got two ugly scars and a prognosis that equated to ‘deal with it.’  And here is what I learned.  This type of news can define you.  Or, more accurately, you can let it define you.  For a while, I found it difficult to get away from the words ‘paralysis,’ ‘progressive’ and ‘pain.’  All of a sudden, there was a lack of control about my future that was almost as draining as the pain I was in.  I can’t even begin to imagine what it must be like for people leaving that office with actual bad news and I have nothing but the utmost respect for people who can deal with so much more adversity with such incredible dignity.

But, this is where the positive part of the story comes in (because this would be a really depressing post without it, right?)  Having decided that multiple surgeries and the medication I was recommended were not an option for me (to be clear this is a very personal decision and there is certainly no comment here on other people’s choices) I needed to stop these conditions from owning me.  And this is where a surprising saviour came in.  I started strength training and, in particular, ‘strong woman’ training (deadlifts, atlas stones, yokes and the like).  I should be clear that this training was born out of a genuine interest and not an attempt to address the issues with my arm.  However, the more I lifted, the heavier the weights got, the more I realised that I no longer identified as someone with a defunct arm but as someone who could lift some okay weights.  A person who was defined by the strength of their deadlift rather than the weakness in their nerve.  Sure, there are things I can’t do as a consequence of some of the tumours, but as a general rule I can find a work around.  The more that I trained, the less bothered I was about these conditions.  I would find myself ruling out further surgery because I didn’t want it to impact on my lifting and deciding that I would just somehow put up with the pain instead.  I can’t say enough how much it has completely changed my relationship with these issues that are now so much more of a side note in my story rather than the main narrative.

Now, I am not saying that this is a one size fits all solution.  What I am saying is that I was surprised by the oblique consequences that I personally experienced when faced with what, ostensibly, seemed like a physical weakness.  There is no judgment here, no argument that it’s for everyone and definitely no suggestion that those who have followed a different route should not have done so (or, indeed, could have done so).  Rather, its an acknowledgement that these things can be hard, they can be lonely and there can be very little out there (that is real and personal) to help.  So, if you want to carry on the conversation feel free to make a comment below and we can get in touch.    In the meantime, stay strong and enjoy the gratuitous picture of the world’s best pup, because his lovely face is undeniably the best medicine 😉


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