The Fear…. Dear life,
I’ve had enough bullshit to last a while, please can we take a break.
We all grow older and age that’s just the circle of life. Some age gracefully some shamefully but I feel like I’m falling apart. I sometimes feel like a clapped-out old car that was made in a bad year of manufacturing and has loads of faults. My breast Cancer treatment took a lot out of me, and that journey was hard, but honestly nothing could ever prepare me for the road I am on now. There is no roundabout on this road no detour just a few petrol stations along the way to keep me going, but the journey stays the same. I’m losing myself to a horrible disease.
You can physically see the wasting of my muscles especially in my legs. The once sporty fun-loving outdoorsy girl is now stuck in the slow lane with one speed and lucky to be still moving. I know my future is mobility scooters and wheelchairs but I’m just not mentally at that acceptance stage yet. I’m clinging onto my walking cane for dear life as I’m afraid once I surrender my body to scooters and wheelchairs there is no going back for me. I know all the positives about mobility devices, easing fatigue, pain, getting about easier but I’m still fighting my head and heart on this. The stubborn ass Siobhan is taking charge even though my head is fighting, and my heart breaks a little bit more each time I think about it. I am so frustrated by my own body and I hate it for letting me down. Some days the hardest battles are the ones no one sees. It’s the mental battles in your head it’s your own thoughts that are haunting you. What am I afraid off?
It's not exactly the fear of the unknown as my beautiful older sister also has this terrible disease. As sisters it has brought us even closer together, we are strangely united in our grief and suffering. We bonded over this connection in a way that our other siblings couldn’t even comprehend. We talk about our aches and pains like two wounded soldiers comparing battle scars after war. We are united in our grief, but we are also two very different individuals as our family circumstances are different. My sister lives, and fights for her two beautiful sons who are her absolute pride and joy. They motivate her to fight to stay going and of course she wants to get to experience as much as she can with them as adults with her husband by her side to watch them flourish and maybe one day watch them have families of their own. Thankfully as far as we know the faulty gene stops with us. Our biggest concerns when we found out was our nieces and nephews inheriting this horrible disease. I was diagnosed first then my sister, but the other two siblings escaped the prison sentence. We are not bitter about this we are happy for them, I would not wish this on anyone else. I do sometimes struggle to see my sister as it breaks my heart to see her in so much pain, she’s my big sister and can be the biggest pain in my arse lecturing me. However I do find it hard sometimes to be in her company, as It’s a constant reminder of what is ahead of me. At the same time she's also my biggest inspiration to see the way she's fighting this disease and living her best life. We fight, we cry, we bitch and occasionally we might be tempted to knock each other’s head off with our walking canes, but sisters are sometimes tempted to want to throttle each other. Our parents especially our mother struggles with guilt. I think if she had known that her and Dad carried this rare gene, I don’t think we’d be here. Then again if that had happened, I wouldn’t be here writing this blog basking in the glory of being the spoilt one after all I am the baby of the family.
You may ask are we traumatized?
The simple and honest answer is yes, how could we not be. I'm not going to lie, they are days we just put on fake smiles and try to make the best of a bad situation. We don’t like the looks of pity and the nasty comments and yes we both have sadly experienced them. I was out one night and a guy, a stranger commented “what’s the story with the cripple”. That comment cut deep and hit me hard as until then I genuinely thought people saw me differently. It made me realize that people see the cane first then me, and that was a bitter pill to swallow. My sister and I have also gotten comments like "what is she doing here if she's not well". It's bad enough having to deal with your disability on a daily basics without having to justify reasons for you trying to exist and live your life to the fullest without the added burden of having to deal with peoples ignorant attitudes.
Behind my smile and bubbly personality is a woman learning to deal with the reality of my situation. I’m just the host body for muscular dystrophy to live in. The only control I have over it is my attitude and my stubbornness to stay fighting it for as long as I can endure it. I have a small circle of girlfriends who I grew up with, they have no filters they keep me on my toes who I love beyond words. In all fairness how could I not love them our WhatsApp group chat name is the party bandits. We all live in different countries and all have faced our own challenges over the years, but no matter what we are they’re for one another always. A sign of a true friend is one that is willing to hold your hair while getting sick, makes you do alcohol shots and wipes away your tears all in the one night.
Muscular dystrophy is a bitch but thankfully so far, I’m being a bigger bitch and not letting it steal all the joy and the love I have in my life. I’m lucky to be surrounded by a supportive husband, family, and friends. I genuinely am very thankful to have them all in my life. Over the years I’ve lost relationships with some family members and friends but the ones who have supported and stuck by me are the only ones I need. I cherish their love and support dearly. When you face illness, you truly do find out who is there for you when you need them the most. The fakes fall away and go into hiding and for this I am grateful as far as I’m concerned, they can stay away.
I just need to remember I have a good life it’s just not the one I thought I’d be living. I don’t want this blog to be all doom and bloody gloom but some days this is the reality of my situation. Don’t get me wrong when I am out, I am all out. I’m an all or nothing type of person. You can bet your ass I will give it 100%. I am known to absolutely tear the arse out of partying so much so I could give the next 2-3 days in bed afterwards recovering. I must take the wins when I get them as it’s these memories that I cherish that help fuel me and get me through the really tough days. I must remember “It’s a good life I have on the good days” and separate the good from the bad and remember on the bad days it’s not me it’s the disease. Siobhan Malone McBarron xo