Last week I had a birthday. A big one! I am now the grand old age of forty! 😛 And although I can no longer describe myself as a ‘young’ lady, and will now have to tick the middle age box on official forms… I am beyond elated to be entering my fifth decade. It’s been my target these past years of illness. 🙂
I was diagnosed with Pulmonary Hypertension at the age of thirty-two. In a short time, I went from working as a full time teacher, to being largely bed-bound with a life-limiting illness. When the doctors finally broke the news of my condition, I was relived. After six months of searching for a diagnosis, it was wonderful to have a name for it, and confirmation that it wasn’t my fault. Even when they told me that the average life expectancy with PH was a mere two to three years, I wasn’t upset. Phil and I had both feared that I wouldn’t survive that first weekend in hospital, so to be offered medicines that might keep me going for another few months or maybe another year or so, was amazing. In those early days, I wasn’t thinking about the condition or the consequences. I was living very much in the moment and not looking forward. The real shock came when I returned home and was finally able to process the new news. I remember crying when reading the literature sent by the PHA UK. The inspiring CD of PHer’s stories featured some who had since passed away from the disease, and the magazine appeared to be full of people raising money in memory of loved ones. Suddenly I was forced to think what that prognosis meant. I might make thirty-five if I’m lucky. Thirty-five! It was shocking. Utterly shocking. Devastating and sad and confusing and traumatic. Overnight my dreams for my old age -and even my middle age- just vanished. I was likely to die in my thirties. It was an incredibly hard thing to comprehend and accept.
So I set myself a target. I wanted to reach forty. 🙂 I longed to beat that prognosis, pass that prediction, live for longer. I needed something to aim for, something to hope for, something to aspire to. Forty seemed an enormous and unrealistic target… it was eight long long years away! But that little voice of positivity in my head kept telling me it was possible. So reaching the big four zero became my secret hope and dream. I knew I wasn’t going to reach the special 60, 70, 100 year birthday milestones of my friends… but I might -with lots of luck and medicine- make my own personal, very special, big birthday.
For the next few years I slowly started making a new life alongside my new condition. But then two and a half years after that initial PH diagnosis, at the age of 35, I deteriorated again. The medicines were no longer working, and my lungs were in free-fall. In my darkest moments it felt like that prognosis was coming true. I was going to die exactly at the time they predicted. They guessed 35… I was now 35! During this time, a childhood friend died of cancer. We’d reconnected in his final months, and I remember being so saddened by his death. It seemed such a tragedy that he passed away so young. It reminded me that I would probably be next. Especially when I was also diagnosed with a second terminal condition -Pulmonary Venous Occlusive Disease- a few months later. With no treatment, no cure and and a rapid decline, plus a prognosis of less than twelve months… it all felt inevitable. I would be gaining my wings soon. As predicted. Even though I was 35 at the time, my target of forty had never seemed so far away. So unreachable. So unlikely.
And yet, amazingly, wonderfully, thankfully, last week I reached that enormous enormous milestone. 🙂 Thanks to the fabulous NHS, some miracle medicines, and a colossal amount of luck… I made it. I achieved my longed for goal! I got to open birthday cards, wear a big badge, eat chocolate cake, and pose next to enormous balloons… all with 4-0 on. And it felt so brilliant! So exciting! I awoke on my birthday morning with a huge grin on my face and tears in my eyes- ridiculously elated! I’d achieved the seemingly impossible. 🙂 Coronavirus changed many of my planned celebrations, but I still got to enjoy early festivities with my best friends, and my Mum, and had a fantastic murder mystery party with my family over Zoom. Then on the day itself, Phil and I had a wonderful adventure exploring the Isle of Arran. Champagne and beaches and my two favourite beings. Perfect! 🙂
Living with a terminal illness has taught me to really appreciate life, and thus celebrate birthdays. Each passing year feels like a miracle, a bonus, an unexpected gift. Something to rejoice. I love growing old! 😀 And reaching my big big big target feels many many times more special. On my dark days it felt so far away, on my poorly days it felt so impossible… yet I made it. A reminder to never give up hope. Thank you wonderful body! 🙂
So I’m guessing I need to set myself a new goal… is 50 too ambitious?! 🙂