Sometimes I feel so uncertain in myself. The strong outward looking, problem solving, always finding a solution bravado escapes me without warning. In the middle of a meeting, during a conversation or just sat on my own, the confidence evaporates like a whiff of smoke, my throat tightens, mouth goes dry, and heart pounds in my chest and echoes in my head. I feel sick, unsure for a moment what is happening, I don’t even know where to look, as the world carries on around me but I want to run. And there lies the irony, I am stuck there, wherever there is, unable to escape, stuck until someone wheels me away from the situation. But how can I ask to be taken away from the situation without letting people know I am falling apart, in pieces inside, screaming to let me hide away, I am suddenly totally lost within myself.
In my mind there is no doubt that disability, neurological in nature or otherwise, has a hidden partner that the public don’t see or understand. It shows its face at the most unexpected times. People around you misinterpret one’s behaviour as you become influenced by ‘it’. ‘It’ grips you suddenly and slams the door on logic and reason. The grip tightens and you feel like you are being choked, gasping for air as everything closes in on you, faces distort and sounds echo all around you. ‘It’ is ruthless, lacking any compassion, a demon of despair waiting to strike at any time, with the speed and violence of a striking cobra. Once ‘it’ strikes, the venom surges through your body and mind at the speed of light, instantly locking the real you away in your own mind.
The poison mashes your thoughts, makes good into bad, perverts your views and collapses your esteem. People staring waiting for you to respond but all moisture in your mouth and throat has evaporated, a dryness that is near impossible to explain, and ‘It’ grips tightly on your vocal cords. So all you can think of doing is nodding but you have forgotten what you are now agreeing to as your heart booms in your ears. At last you can escape to the rest room where you can gain some privacy, try and gain control. Head swimming, feeling sick, you gasp for breath as you splash cold water on your face to try and shock you back into having some control. You know you were so close to passing out, your brain wanting to declare a shut-down and pressing its own reset button. But slowly you calm, gain some semblance of self-control but this isn’t the end of this ‘attack’ of ‘it’. Once I have calmed enough I head for fresh air, I can hear someone asking if I am OK? I nod reassuringly and garble, “Yes I’m fine, just getting some air”, but I don’t make eye contact in case they see that I am still far from controlling the venom of ‘it’ in my mind.
You see ‘it’ is what is hidden by so many people with disabilities; ‘it’ is the unspoken added disability that couples with many conditions which, by their nature, strips you of dignity. ‘It’, this constant partner, is mental health problems such as depression, panic, anticipatory anxiety, agoraphobia, claustrophobia and so on. ‘It’ is never far away and the panic can strike anytime, anyplace, anywhere, and I have lost count of the number of times it has overwhelmed me:
- When surrounded by people in the supermarket;
- When in meetings;
- When in a small room;
- When I can’t see the exit;
- When in my own shower/wet room;
- When alone at night in the dark;
This last point is where mental health problems really come out to play. The negative thoughts about yourself, the fear of what will happen, the fear of what will be as your condition deteriorates. With me it is not about my condition and how it affects me, I am not as selfish and egocentric as that yet, but it is the understanding of the effect on others. This goes round and round in my head. My ‘condition’ is not just a life sentence for me but for my loved ones too, and this is so very hard to bear. As a Father and a Husband I was brought up to believe that, as anachronistic as it sounds, I was there to support and care for my children and Wife, but instead I find I am a source of constant worry to them, a burden to them, physical detritus that needs caring for 24/7, and it’s going to get worse. At night this plays on my mind so much. I try to hide it and ignore it but that’s when it bursts into my brain at the most inconvenient of times in the form of panic I guess. I never wanted this life of showering, cleaning, dressing, pressure area care, and the list goes on, and I never wanted it for my loved ones. The stress I cause them cuts so deep into me as well. The care removes any dignity, and the support removes self-respect, and all that is left is a burden on my loved ones.
People say that if the tables were turned wouldn’t you give your loved ones the same support, and of course I say yes, as I would without a moment’s thought. However, this doesn’t change anything. The demon in my psyche won’t allow it, rationalisation is banned by ‘it’. This is the part people really don’t understand, there is a mental health toll, a mental health component to having a significant disability and it corrupts your thoughts and thinking relating to yourself and others; there is little one can do about it. Most days you can keep yourself busy enough not to face the demon, not to show the horror show in your mind that is playing out in the background waiting for night to come to be released. But as I have mentioned, every now and then it opens the door just a little onto the world you are trying to engage with and ravages ability to function. One puts so much effort into containment, people say you should talk about such things to bring them into the light, but this is not what the mind wants. The mind wants, the mind must, it has to crush the demon down, hold the door shut on it as tightly as you can, concentrate on other things and pretend what is behind the door does not exist. All one’s energy is spent on this strategy as to let it out would make living impossible.
It is hard enough living with such a disability, such an all-consuming ‘condition’, knowing the negative impact you have on your loved ones, knowing the burden you are to them. One has become very much like a form of human parasite imprisoning your loved ones in the never changing routine of your care. They too are unable to escape this wretched disability and the negative spread it has infecting all that come close. To also have to deal with the hidden demon makes life so much more complicated, so much harder for everyone, and there is not a drug in the world, a therapy or treatment that can help this state of affairs.
Mental health problems comes with every significant disability, unavoidably so, and all one can do is love your family with unconditional respect, and get through one hour at a time, one day at a time, keeping that door firmly locked and bolted as much as possible, hoping tonight the demon is not able to escaped into the open, the spiral into despair does not start, hoping is all I can do.
Smiling Cat Ventures and Innovations Group
Smiling Cat Ventures Ltd (www.smilingcatventures.org)
Innovative Minds At Work Ltd (www.innovativemindsatwork.org)
Moments in Time Ltd (www.momentsinmind.org)
Innovative Business Consultancy Ltd (www.ibcv.org.uk)
Systems of Equality Ltd
Passport to Care Ltd (Social Enterprise – Not For Profit)
Spiritual Inclusion (Social Enterprise – Not For Profit)
Disability In Business Centre (in development)
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