"Sometimes, reaching out and taking someone’s hand is the beginning of a journey, and other times, its allowing another to take yours".
Accepting help- No more proud Siobhan! So this one I really struggled with especially in the beginning of my journey. We are constantly being influenced by social media to be strong independent women so me accepting or asking for help wasn’t an option I ever wanted to take. Over the years I’d only ask those in my immediate close circle for help, as I didn’t want to be seen any different. I made constant excuses to why I couldn’t attend events or part take in activities as to look at me I looked perfectly healthy. Little did they know my body was slowly letting me down, only my family and close friends knew of my diagnosis. To anyone looking at me they couldn’t tell any difference. I could easily put on a brave face for a weekend, but what they didn’t see was that I ended up paying for it for days afterwards. Too be fair at the time I didn’t even have sympathy for myself, at times I did push my body to see how far it could go. My “it will be grand, stubborn attitude forbid it”. Sadly, there does come a time and the realisation sets in when you must admit defeat.
These days, I’ve no other choice so I now ask for help, but I will still only ask those I trust. It is very hard to let people in and to let them see the vulnerable side of you. It’s about self-pride and self-preservation. I remember falling outside a petrol station in my late 20’s and coming home to my dad and my uncle with tears streaming down my face. Yes, I hurt my knee when I fell but my tears were temper tears. I was so mad at myself for falling in public. I knew it could easily happen to anyone, but for me it was the realisation that this was only the start of the falls for me. I remember ending up on crutches after this fall and one of my sibling’s partners said, “that there was nothing wrong with me that I was only looking for attention”. Obviously when my innocent niece relayed this information back to me, I was beyond disappointed and hurt by the comment considering that person knew my medical history. Since that day I haven’t spoke to her and never will again. I don’t need negative people, and I wholeheartedly refuse to entertain nasty ignorant people in my life.
I am a known by those close to me to be a stubborn person who doesn’t take or tolerate bullshit from anyone, so I naturally hate not being independent. It literally used to hurt my pride to ask for help. I remember being mortified getting wheelchair assistance through the airport when I was first sick with cancer. I didn’t mind the bald head it was the stigma of being in a wheelchair I couldn’t handle. I stupidly thought that people were staring at me because of the wheelchair but looking back it probably was more to do with the fact I looked like Gollum from Lord of the Rings after chemo. I know there is no shame in using a wheelchair or getting wheelchair assistance and I’m not here to offend anyone that was just my personal feeling at the time. Now I use them all the time when traveling or in large shopping malls. I don’t personally own a wheelchair yet. Even though I’ve done my research and have one picked out like I said in my earlier post I’m just not mentally at the point yet of owning one. I do not want to commit to surrendering my walking canes yet as I am trying to stay upright and walking for as long as possible while I can still physically endure the pain.
I was recently at home in Ireland for a wedding and I remember it being in the early hours of the morning and I turned to my husband and said I’m tired and that I need to go to bed. To be fair no one was still in great shape at this hour. Thankfully a friend overheard this conversation and went to reception and came back with a wheelchair. I was never so happy to see one as I was exhausted. Yes, naturally at first my pride was a little offended, but he was right. By getting in the chair, it reduced the chances of me falling and hurting myself and enabled me to get back to my room safely and ensured I was ok to enjoy the next day’s celebrations. Paul could see the tiredness in my eyes and the exhaustion painted across my face and just took control of the situation. At that time, it was exactly what I needed. Slowly over time my faith in humanity is being restored especially after having such bad experiences previously. To accept kindness from friends and strangers is so nice when the rudest and most disgusting comments have come from so called family members who are meant to be the ones that love you unconditionally and are meant to support you.
When you get sick there are stages of emotions you go through. The denial, the anger, the self-sabotaging stage, then the acceptance stage. I haven’t totally gotten to the acceptance stage yet and I don’t honestly think I’ll ever fully will accept it. It annoys me that we don’t have a cure for this disease, but scientist could cure impotence “literally can raise the dead” in men but not prevent my muscles from wasting away.
When my husband and I speak about our future now it’s about renovating the house in preparation of me ending up in a wheelchair making our home accessible and safe for me. I want our home to be homely and not look like a nursing home with ramps and handrails everywhere. But I also will need all those things to have a better quality of life and to remain living at home safely. I’m currently working to save for all these expensive house remodelling works so that’s another obstacle to deal with the financial strain. Over the years we have had to make sacrifices to try save for this day as we have known for a long time that my health would deteriorate. This is a chapter in our story we continue to explore, and it is my journey that I will take you on with me. To be continued
Siobhan Malone McBarron xo