PoetsIN Co-Founder Sammie, talks about the true meaning of Christmas.
This time of year isn’t always easy for people. It’s not for me either. The Christmas and New Year festivities have always been difficult and often distressing for me. It’s the time of year where everyone expects you to be full of excitement and cheer. There’s a shed-load of pressure to conform to the hallmark-card happiness that, when you have a mental illness, is totally unachievable.
Christmas has become too much for many of us. Running a mental health charity, I get to speak to many people who echo the same despair and desolation at this time of year. There’s an expectation – whether metaphorical or literal – to be happy, cheerful, merry, excited – to go nuts with the plastic ball-and-chain, and give gifts beyond what we can afford; and yes, I have totally failed at all of those things this year. But, I don’t care. Here’s why…
In October 2017, the rug was pulled from beneath my feet. My daughter was diagnosed with a heart condition. After years of being told her racing heart was just anxiety, it was discovered that medical professionals were wrong and that my 13 year old had an extra (or more) electrical circuit (pathway) in her heart.
Having a mental illness myself made the news more difficult to process and handle. She was immediately put on beta-blockers to slow her heart down, and surgery was imminent. The silver lining, we were told, was that the issue was fixable. Fast-forward to Valentines Day 2018 (ironical right?) and my brave girl was getting pre-operative checks to ensure she was healthy enough to have the operation on the 15th Feb. Six hours in surgery and my own anxiety threatening to cause a panic attack, my girl had made it through, sadly, it didn’t work.
Our entire world came crashing down. We were told that it was fixable but they didn’t fix it. In fact, she left theatre with a dangerously high and abnormal rhythm and rate, and was put on anti-arrhythmia meds along with her beta-blockers. 5 days later, we left Great Ormond Street Hospital, battered and bruised (physically and emotionally for her), and feeling lost.
August 2018 was their second attempt at removing her extra pathway. It failed again. Stood in the recovery room with my 14 year old child, I broke down; conversations had changed from “next time we’ll fix it,” to “we need to manage this condition to avoid heart failure.” It all became too much to handle. The possibility of losing my daughter became something that was very real. Meds were increased, emergency care plans were written and put in place, and we were sent home.
During the months that followed, we’d been in hospital at least once a fortnight, sometimes more often. Doctors and nurses in our home town began to remember our names and faces, and I had to advise doctors on her care plan and what was needed and expected from their medical care. These visits became more frequent and by October, Great Ormond Street cardiologists – who are some of the best in the world – were stumped by my kid. It was decided that we’d be admitted to change her medication in November. The medication she was on wasn’t working and she was spending a lot of time in supra-ventricular tachycardia (abnormal rhythm and a rate that was often 180+ beats per minute). Too much SVT and the heart muscle can grow tired and begin to fail – something we obviously wanted to avoid, hence the med change.
November came, a new cocktail of drugs given, a stay of 5 days 85 miles away from home, and we finally made it home… For two hours. Two. Within two hours of being home, we ended up in our emergency department with abnormal heart rhythm and rate. Within 24 hours, we were rushed back to Great Ormond Street Hospital, 85 miles away, via emergency ambulance. Another 6 days in hospital and the only med left to try was given. The very med we were all trying to avoid due to its many side effects – some of which are life changing and deadly.
Since we left the hospital for the second time on the 1st of December, we’ve spent 4 days at home. The rest have been watching my beautiful daughter wilt in a hospital bed with starched sheets. Her mental health has suffered hugely, her life has been turned upside down, and the hobbies she loves the most? Non-existent now. Dancing and skating were her coping mechanisms for her other disabilities; they were also what she wanted to do in her future. Now, she gets breathless from getting out of bed.
My mental health has suffered hugely, too. This year has been illuminating, to say the least. I’ve realised friends are fickle. Those who I considered true friends are nowhere to be seen in my darkest moments. I’m lucky that through my charity, I have met some of the most incredible people, who have swiftly become my new friends, my family, my support – and I am so grateful for them. I’ve also learned that I look too far ahead, which fuels my anxiety. Having a sick child forces you to live in the moment, teaches you to be flexible, and less rigid in your plans.
This is where Christmas fits in. Whilst many know what their plans are, my plan is simple. Avoid being in hospital. Keep the day calm, quiet, but special for my children. Create memories in the darkness by hanging stars and watching them twinkle with my wonderful kids. Teach them the true meaning of Christmas, not the commercialism we have all fallen prey to.
This Christmas, other than my kids who bloody deserve it, I haven’t bought any gifts or cards. My loved ones know they are loved. I tell them every day. I show them by being there for them in times of light and darkness. I listen to them, consider them, laugh and cry with them, and pick them up when they feel weak. If that isn’t good enough for others, I no longer care.
To everyone reading this, if Christmas doesn’t make you happy, it’s okay. If you feel miserable, it’s okay to not be okay. If you can’t afford gifts, it’s okay. So long as you are safe and warm, nothing else matters. If you need to talk, my charity has a Facebook Group that is manned 24/7 365, or we have our live chat feature right here on the website. We don’t close for Christmas. There is always someone willing to talk.
I won’t finish this with a “Merry Christmas,” I’ll finish this with a…
Take care of yourself. Be strong. This too shall pass.
Hey Sam, Sending you much love and wishing you oceans of luck. Your daughter sounds like she is cut from the same rock as her Mum. I don’t know if I told you that Damian had a terminal diagnosis just before Christmas and like you I made Christmas all about loving each other and making sure he is happy and loved, it is all we can do to light the dark sometimes love and constancy xxx if you need a chat anytime, feel free Happy Solstice and wish you a better new year xxxx
It’s impossible for a parent in this situation not to be plagued by wondering if they could have, should have or could be doing something differently than what they are doing. Even from across the ocean and a continent, I know for absolutely certain that you can put that doubt to rest.
Who knew how intimately you would comprehend the experience of some of the women you have been reaching out to in prison — the sense of being confined by circumstances beyond your control. And in the face of this sense of powerlessness, instead of paralysis I have seen you find the wherewithal to comment positively on every single post on PoetsIn, and to continually reach out to every member and offer your support and the support of the group. It is no magic wand for your own pain – there is only one cure for that and the doctors haven’t it yet. But it means something. It means a alot. And that, to me, is the true meaning of Christmas.