[TW] Supporting A Loved One With A Disability

UntitledMy husband’s condition is not something I talk about often but it isn’t something I hide.

My husband suffers from epileptic seizures, to be exact, he has absence seizures. His seizures are unpredictable, they can happen at any moment, they usually last around a minute.

In retrospect, we live a normal life and function as a typical couple, most of the time his seizures are ‘blips‘ and don’t cause concern. Over my time of knowing my husband, I have learnt to deal with and understand his disability. It no longer scares me as much, however I do have bad anxiety, especially when I cannot keep an eye on him.

The first time he had a seizure in front of me, I felt like my heart had dropped. I called his parents in a panic and followed their advice, at this time I knew he had epilepsy but I have never dealt with an epileptic before. After all of the fuss, I explained what had happened to him and we laughed, he’s positive and always sees the funny sides of things. I did a lot of research and spoke to his parents for advice, knowledge is key.

It wasn’t until November 2016 that the reality of his epilepsy hit me. In the night, a large mirror had fallen and smashed, I picked up the pieces and asked him to take the bag outside as we have pets and don’t want them getting hurt. I had left him for a second to pee, when I could hear strange noises. I thought he was messing about but when he didn’t respond, I found him on the floor. He had narrowly missed falling on a bag full of shards and was having a general seizure, which he has never had before and thankfully has been a one time thing.

I had never been so scared in my life, we were due to get married in a few months and if he had fallen to his front, he would, in his words, be a sieve. I was in a state of shock and my heart was beating so fast, I called 999 so fast, trying to find words in my hyperventilating state. Luckily for both of us, the paramedic arrived soon. In the end he was safe and had almost no damage, it was a miracle but it left me with horrible worry.

It really reminded me, how I could lose my husband in a matter of seconds. I am so in love with him but I did have to put into the perspective that I am marrying a man who will have epilepsy for the rest of his life. It could get worse if the scar on his brain grows, which it has in recent months. It sounds so selfish but I have already lost the most important man in my life, my dad, I couldn’t lose my husband too.

I worry on a daily basis that I may lose my husband but there are also times when I forget he has a disability. I love him so much and that sort of takes over, I don’t see it as a problem at all, just only when it presents himself or he is alone but even then it’s only because I want to protect him.

When he bikes to work I worry he will fall off his bike or he will get hit by a car. I worry he will drown in the bath or crack his head open. I worry he will fall down the stairs. If he shuts down for just a second, it can be fatal and my anxiety loves to remind me of that.

I am always on alert in these times and I have to make him text me so I know he is alive, so if he texts late or forgets, I end up thinking the worst and my heart stops, as that is how my brain works.

He may never get cured and I doubt my anxiety will ever stop me from worrying. It is not easy to care for a person with a disability. It’s hard to be married to a man who can’t drive you places and do typical things but for me, his disability will never be enough to stop my loving him. I mean, so we can’t drive around the place but that hasn’t stopped us traveling so far!

The one thing I have learnt, if you love a person, be it romantic or not, is that the disability is only as limiting as you let it be. The modern world has adapted massively to many disabilities, so you can still enjoy a fruitful life with a person with a disability. I am a firm believer that there is always more than just one option – remember that!

I have found that texts re-assure me but also trying to rationalize and put in place a plan of action if something goes wrong helps a lot. I know it can twist your mind in knots when you can’t supervise you loved one but as long as you love them and are there for them, then you are doing your best. Even if there was an accident it’s not your fault and they will get help if they are not alone.

Talking to professionals and having a strong support network, as well as understanding how epilepsy affects my husband has given me comfort. Anxiety means I am prone to worry more than most so a little but of support and understanding goes a long way. If you are ever concerned or scared, I’ve learnt that the best thing to do is just ask, there is no harm in that.

If you are a carer of someone, or a loved one has a disability, it’s a good thing to care for them but remember you need to care for yourself as well. Get the support you need and don’t suffer alone, talk if you need to.

I also want to mention to a person with epilepsy, who may read this, that I understand how hard it must be to be controlled or limited by something you did not choose to have.

The ultimate truth is that my husband has a loving wife, he works, travels and gets to do almost everything he wants. If you look you can find alternatives and compromises. You are not your disability and you certainly don’t need to let it consume you.

My husband doesn’t let his epilepsy dictate his life, he is happy and full of life, which he lives to the full. I am proud to have him by my side as my husband, his disability is part of him but he is still perfect – raw diamonds are worth more after all.


 

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